tag:theconversation.com,2011:/es/topics/bioethics-264/articlesBioethics – The Conversation2024-02-14T13:25:12Ztag:theconversation.com,2011:article/2225562024-02-14T13:25:12Z2024-02-14T13:25:12ZSeveral companies are testing brain implants – why is there so much attention swirling around Neuralink? Two professors unpack the ethical issues<figure><img src="https://images.theconversation.com/files/575184/original/file-20240213-26-hubky4.jpg?ixlib=rb-1.1.0&rect=0%2C6%2C2083%2C1427&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Brain-computer interfaces have the potential to transform some people's lives, but they raise a host of ethical issues, too.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/artificial-intelligence-brain-royalty-free-image/1195715936?phrase=brain+computer&adppopup=true">Andriy Onufriyenko/Moment via Getty Images</a></span></figcaption></figure><p><em>Putting a computer inside someone’s brain used to feel like the edge of science fiction. Today, <a href="https://www.gao.gov/products/gao-22-106118">it’s a reality</a>. Academic and commercial groups are testing “brain-computer interface” devices to enable people with disabilities to function more independently. Yet Elon Musk’s company, Neuralink, has put this technology front and center in debates about safety, ethics and neuroscience.</em> </p>
<p><em>In January 2024, Musk announced that Neuralink <a href="https://twitter.com/elonmusk/status/1752098683024220632">implanted its first chip</a> in a human subject’s brain. The Conversation reached out to two scholars at the University of Washington School of Medicine – <a href="https://depts.washington.edu/bhdept/nancy-s-jecker-phd-sheher">Nancy Jecker, a bioethicst</a>, and <a href="https://neurosurgery.uw.edu/bio/andrew-l-ko-md">Andrew Ko, a neurosurgeon</a> who implants brain chip devices – for their thoughts on the ethics of this new horizon in neuroscience.</em> </p>
<h2>How does a brain chip work?</h2>
<p>Neuralink’s coin-size device, called N1, is designed to enable patients to carry out actions just by concentrating on them, without moving their bodies.</p>
<p>Subjects in <a href="https://neuralink.com/pdfs/PRIME-Study-Brochure.pdf">the company’s PRIME study</a> – short for Precise Robotically Implanted Brain-Computer Interface – undergo surgery to place the device in a part of the brain that controls movement. The chip records and processes the brain’s electrical activity, then transmits this data to an external device, such as a phone or computer.</p>
<p>The external device “decodes” the patient’s brain activity, learning to associate certain patterns with the patient’s goal: moving a computer cursor up a screen, for example. Over time, the software can recognize a pattern of neural firing that consistently occurs while the participant is imagining that task, and then execute the task for the person. </p>
<p><a href="https://neuralink.com/#mission">Neuralink’s current trial</a> is focused on helping people with paralyzed limbs <a href="https://www.youtube.com/watch?v=z7o39CzHgug">control computers or smartphones</a>. Brain-computer interfaces, commonly called BCIs, can also be used to control devices <a href="https://doi.org/10.1080/17483107.2023.2211602">such as wheelchairs</a>.</p>
<h2>A few companies are testing BCIs. What’s different about Neuralink?</h2>
<p>Noninvasive devices positioned on the outside of a person’s head <a href="https://penntoday.upenn.edu/news/challenges-and-advances-brain-computer-interfaces">have been used in clinical trials for a long time</a>, but they have not received approval from the Food and Drug Administration for commercial development. </p>
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<a href="https://images.theconversation.com/files/575212/original/file-20240213-18-6c2r7t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A young woman in a green shirt sits with a wired contraption on her head as four other people look on." src="https://images.theconversation.com/files/575212/original/file-20240213-18-6c2r7t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/575212/original/file-20240213-18-6c2r7t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/575212/original/file-20240213-18-6c2r7t.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/575212/original/file-20240213-18-6c2r7t.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/575212/original/file-20240213-18-6c2r7t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/575212/original/file-20240213-18-6c2r7t.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/575212/original/file-20240213-18-6c2r7t.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">A visitor experiences a BCI system during the 2023 China International Fair for Trade in Services in Beijing.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/visitor-experiences-domestic-brain-computer-interface-news-photo/1648339155?adppopup=true">Li Xin/Xinhua via Getty Images</a></span>
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<p>There are other brain-computer devices, like Neuralink’s, that are <a href="https://doi.org/10.1038/d41586-024-00304-4">fully implanted and wireless</a>. However, <a href="https://neuralink.com/pdfs/PRIME-Study-Brochure.pdf">the N1 implant</a> combines more technologies in a single device: It can target individual neurons, record from thousands of sites in the brain and recharge its small battery wirelessly. These are important advances that could produce better outcomes.</p>
<h2>Why is Neuralink drawing criticism?</h2>
<p>Neuralink <a href="https://twitter.com/neuralink/status/1661857379460468736?lang=en">received FDA approval</a> for human trials in May 2023. Musk <a href="https://twitter.com/elonmusk/status/1752098683024220632">announced the company’s first human trial</a> on his social media platform, X – formerly Twitter – in January 2024.</p>
<p>Information about the implant, however, <a href="https://www.reuters.com/technology/want-details-elon-musks-brain-implant-trial-youll-have-ask-him-2024-02-02/">is scarce</a>, <a href="https://neuralink.com/pdfs/PRIME-Study-Brochure.pdf">aside from a brochure</a> aimed at recruiting trial subjects. Neuralink did not register at <a href="https://clinicaltrials.gov/">ClinicalTrials.gov</a>, as is <a href="https://clinicaltrials.gov/policy/faq">customary, and required by some academic journals</a>. </p>
<p>Some scientists are troubled by <a href="https://doi.org/10.1038/d41586-024-00304-4">this lack of transparency</a>. <a href="https://doi.org/10.1161/CIRCOUTCOMES.112.965798">Sharing information about clinical trials is important</a> because it helps other investigators learn about areas related to their research and can improve patient care. Academic journals can also be <a href="https://doi.org/10.1177/25152459211007467">biased toward positive results</a>, preventing researchers from learning from unsuccessful experiments. </p>
<p>Fellows at the Hastings Center, a bioethics think tank, have warned that Musk’s brand of “<a href="https://www.thehastingscenter.org/the-neuralink-patient-behind-the-musk/">science by press release, while increasingly common, is not science</a>.” They advise against relying on someone with a huge financial stake in a research outcome to function as the sole source of information.</p>
<p>When scientific research is funded by <a href="https://www.gao.gov/products/gao-23-105396">government agencies</a> or <a href="https://sciencephilanthropyalliance.org/">philanthropic groups</a>, its aim is to promote the public good. Neuralink, on the other hand, embodies <a href="https://www.propublica.org/article/what-is-private-equity">a private equity model</a>, which is <a href="https://thehill.com/opinion/healthcare/4365741-private-equity-is-buying-up-health-care-but-the-real-problem-is-why-doctors-are-selling/">becoming more common</a> <a href="https://www.press.jhu.edu/books/title/12719/ethically-challenged">in science</a>. Firms pooling funds from private investors to back science breakthroughs may strive to do good, but they also strive to maximize profits, which <a href="https://doi.org/10.1136/medethics-2021-107555">can conflict with patients’ best interests</a>.</p>
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<a href="https://images.theconversation.com/files/575187/original/file-20240213-22-j0czv9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A phone screen shows a white page that says 'Elon Musk,' positioned below an abstract black design and the word 'NEURALINK.'" src="https://images.theconversation.com/files/575187/original/file-20240213-22-j0czv9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/575187/original/file-20240213-22-j0czv9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=366&fit=crop&dpr=1 600w, https://images.theconversation.com/files/575187/original/file-20240213-22-j0czv9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=366&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/575187/original/file-20240213-22-j0czv9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=366&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/575187/original/file-20240213-22-j0czv9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=460&fit=crop&dpr=1 754w, https://images.theconversation.com/files/575187/original/file-20240213-22-j0czv9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=460&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/575187/original/file-20240213-22-j0czv9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=460&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Neuralink’s first human implant was announced on Elon Musk’s social media platform X, formerly known as Twitter, in January 2024.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/elon-musk-account-on-twitter-and-neuralink-emblem-displayed-news-photo/1247138943?adppopup=true">NurPhoto via Getty Images</a></span>
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<p>In 2022, the U.S. Department of Agriculture <a href="https://www.reuters.com/technology/musks-neuralink-faces-federal-probe-employee-backlash-over-animal-tests-2022-12-05/">investigated animal cruelty</a> at Neuralink, according to a Reuters report, after employees accused the company of rushing tests and botching procedures on test animals in a race for results. The agency’s inspection found no breaches, according to a letter from the USDA secretary to lawmakers, which Reuters reviewed. However, the secretary did note an “adverse surgical event” in 2019 that Neuralink had self-reported. </p>
<p>In a separate incident also reported by Reuters, the Department of Transportation <a href="https://www.reuters.com/technology/musk-brain-implant-company-violated-us-hazardous-material-transport-rules-2024-01-26/">fined Neuralink</a> for violating rules about transporting hazardous materials, including a flammable liquid. </p>
<h2>What other ethical issues does Neuralink’s trial raise?</h2>
<p>When brain-computer interfaces are used to help patients who suffer from disabling conditions function more independently, such as by helping them communicate or move about, this can profoundly improve their quality of life. In particular, it helps people recover a sense of their own agency or autonomy – one of <a href="https://depts.washington.edu/bhdept/ethics-medicine/bioethics-topics/articles/principles-bioethics">the key tenets</a> of medical ethics. </p>
<p>However well-intentioned, medical interventions can produce unintended consequences. With BCIs, scientists and ethicists are particularly concerned about the potential for <a href="https://theconversation.com/brain-computer-interfaces-could-allow-soldiers-to-control-weapons-with-their-thoughts-and-turn-off-their-fear-but-the-ethics-of-neurotechnology-lags-behind-the-science-194017">identity theft, password hacking and blackmail</a>. Given how the devices access users’ thoughts, there is also the possibility that <a href="https://doi.org/10.1057/s41599-023-02419-x">their autonomy</a> could be manipulated by third parties. </p>
<p>The ethics of medicine requires physicians to help patients, while minimizing potential harm. In addition to errors and privacy risks, scientists worry about <a href="https://doi.org/10.1038/d41586-024-00304-4">potential adverse effects</a> of a completely implanted device like Neuralink, since device components are not easily replaced after implantation.</p>
<p>When considering any invasive medical intervention, patients, providers and developers seek a balance between risk and benefit. At current levels of safety and reliability, the benefit of a permanent implant would have to be large to justify the uncertain risks.</p>
<h2>What’s next?</h2>
<p>For now, Neuralink’s trials are focused on patients with paralysis. Musk has said his ultimate goal for BCIs, however, is to help humanity – <a href="https://www.vox.com/future-perfect/2019/7/17/20697812/elon-musk-neuralink-ai-brain-implant-thread-robot">including healthy people</a> – “<a href="https://www.technologyreview.com/2020/08/30/1007786/elon-musks-neuralink-demo-update-neuroscience-theater/">keep pace” with artificial intelligence</a>.</p>
<p>This raises questions about another core tenet of medical ethics: <a href="https://link.springer.com/article/10.1007/s41465-018-0108-x">justice</a>. Some types of supercharged brain-computer synthesis could exacerbate social inequalities if only wealthy citizens have access to enhancements.</p>
<p>What is more immediately concerning, however, is the possibility that the device could be increasingly shown to be helpful for people with disabilities, but become unavailable due to loss of research funding. For patients whose access to a device is tied to a research study, the <a href="https://doi.org/10.1016/j.brs.2023.04.016">prospect of losing access after the study ends</a> can be devastating. This raises thorny questions about whether it is ever ethical to <a href="https://doi.org/10.1136/medethics-2016-103868">provide early access</a> to breakthrough medical interventions prior to their receiving full FDA approval.</p>
<p><a href="https://www.researchgate.net/publication/365700467_The_Unique_and_Practical_Advantages_of_Applying_A_Capability_Approach_to_Brain_Computer_Interface">Clear ethical and legal guidelines are needed</a> to ensure the benefits that stem from scientific innovations like Neuralink’s brain chip are balanced against patient safety and societal good.</p><img src="https://counter.theconversation.com/content/222556/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Brain-computer interface devices have the potential to boost users’ autonomy, especially for people who experience paralysis. But that comes with risks, as well.Nancy S. Jecker, Professor of Bioethics and Humanities, School of Medicine, University of WashingtonAndrew Ko, Assistant Professor of Neurological Surgery, School of Medicine, University of WashingtonLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2190052023-12-14T19:19:48Z2023-12-14T19:19:48ZEggs from men, sperm from women: how stem cell science may change how we reproduce<figure><img src="https://images.theconversation.com/files/564442/original/file-20231208-17-22yb4u.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C1000%2C748&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-illustration/morula-early-stage-embryo-consisting-cells-776035219">nobeastsofierce/Shutterstock</a></span></figcaption></figure><p>It may soon be possible to coax human skin cells into becoming functional eggs and sperm using a technique known as “in vitro gametogenesis”. This involves the creation (genesis) of eggs and sperm (gametes) outside the human body (in vitro). </p>
<p>In theory, a skin cell from a man could be turned into an egg and a skin cell from a woman can become a sperm. Then there’s the possibility of a child having multiple genetically-related parents, or only one.</p>
<p>Some scientists believe human applications of in vitro gametogenesis are a <a href="https://www.statnews.com/2023/10/02/ivg-ivf-replacement-reproductive-technology-hype/">long way off</a>. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1708819232077533218"}"></div></p>
<p>However, scientists who work on human stem cells are <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10579208/">actively working</a> on overcoming the barriers. <a href="https://www.statnews.com/2023/04/08/ivf-eggs-hormones-gameto-reproductive-fertilo/">New</a> <a href="https://www.technologyreview.com/2021/10/28/1038172/conception-eggs-reproduction-vitro-gametogenesis/">biotechnology</a> <a href="https://www.newyorker.com/magazine/2023/04/24/the-future-of-fertility">start-ups</a> are also seeking to commercialise this technology.</p>
<p>Here’s what we know about the prospect of human in vitro gametogenesis and why we need to start talking about this now.</p>
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Read more:
<a href="https://theconversation.com/explainer-what-are-stem-cells-14391">Explainer: what are stem cells?</a>
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<h2>Is the technology available?</h2>
<p>In vitro gametogenesis begins with “pluripotent stem cells”, a kind of cell that can develop into many different cell types. The aim is to persuade these stem cells to become eggs or sperm.</p>
<p>These techniques could use stem cells taken from early embryos. But scientists have also worked out how to <a href="https://www.eurostemcell.org/stemcellshorts-what-are-induced-pluripotent-stem-cells">revert adult cells</a> to a pluripotent state. This opens up the possibility of creating eggs or sperm that “belong to” an existing human adult.</p>
<p>Animal studies have been promising. In <a href="https://www.nature.com/articles/490146b">2012</a>, scientists created live-born baby mice using eggs that began their life as skin cells on a mouse tail.</p>
<p>More recently, the technique has been used to facilitate same-sex reproduction. Earlier this year, scientists created mouse pups with <a href="https://www.nature.com/articles/d41586-023-00717-7">two genetic fathers</a> after transforming skin cells from male mice into eggs. Mouse pups with <a href="https://www.nature.com/articles/d41586-018-06999-6">two genetic mothers</a> have also been created.</p>
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<figcaption><span class="caption">How scientists bred mice with two fathers.</span></figcaption>
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<p>Scientists have not yet managed to adapt these techniques to create human gametes. Perhaps because the technology is still in its infancy, Australia’s legal and regulatory systems do not address whether and how the technology should be used. </p>
<p>For example, the National Health and Medical Research Council’s <a href="https://www.nhmrc.gov.au/about-us/publications/art">assisted reproduction guidelines</a>, which were updated in 2023, do not include specific guidance for in vitro-derived gametes. These guidelines will need to be updated if in vitro gametogenesis becomes viable in humans.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-future-of-stem-cells-tackling-hype-versus-hope-72052">The future of stem cells: tackling hype versus hope</a>
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</em>
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<h2>The potential</h2>
<p>There are three distinct clinical applications of this technology.</p>
<p>First, in vitro gametogenesis could streamline IVF. Egg retrieval currently involves repeated hormone injections, a minor surgical procedure, and the <a href="https://www.mayoclinic.org/diseases-conditions/ovarian-hyperstimulation-syndrome-ohss/symptoms-causes/syc-20354697">risk</a> of overstimulating the ovaries. In vitro gametogenesis could eliminate these problems.</p>
<p>Second, the technology could circumvent some forms of medical infertility. For example, it could be used to generate eggs for women born without functioning ovaries or following early menopause.</p>
<p>Third, the technology could allow same-sex couples to have children who are genetically related to both parents.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/promising-assisted-reproductive-technologies-come-with-ethical-legal-and-social-challenges-a-developmental-biologist-and-a-bioethicist-discuss-ivf-abortion-and-the-mice-with-two-dads-208276">Promising assisted reproductive technologies come with ethical, legal and social challenges – a developmental biologist and a bioethicist discuss IVF, abortion and the mice with two dads</a>
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</em>
</p>
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<h2>Legal, regulatory and ethical issues</h2>
<p>If the technology becomes viable, in vitro gametogenesis will alter the dynamics of how we create families in unprecedented ways. How we should respond requires careful consideration.</p>
<p><strong>1. Is it safe?</strong></p>
<p>Careful trials, rigorous monitoring, and follow-up of any children born will be essential – as it has been for other <a href="https://theconversation.com/maeves-law-would-let-ivf-parents-access-technology-to-prevent-mitochondrial-disease-heres-what-the-senate-is-debating-176668">reproductive</a> <a href="https://theconversation.com/rest-assured-ivf-babies-grow-into-healthy-adults-23432">technologies</a>, including IVF.</p>
<p><strong>2. Is it equitable?</strong></p>
<p>Other issues relate to access. It might seem unjust if the technology is only available to the wealthy. Public funding could help – but whether this is appropriate depends on whether the state <a href="https://theconversation.com/ideas-for-australia-rethinking-funding-and-priorities-in-ivf-should-the-state-pay-for-people-to-have-babies-57036">ought to support</a> people’s reproductive projects.</p>
<p><strong>3. Should we restrict access?</strong></p>
<p>For instance, pregnancy is rare in older women, largely because egg count and quality <a href="https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/age-and-fertility">decline with age</a>. In vitro gametogenesis would theoretically provide “fresh” eggs for women of any age. But helping older women become parents is <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5566409/">controversial</a>, due to physical, psychological and other factors associated with having babies later in life.</p>
<p><strong>4. We’d still need surrogates</strong></p>
<p>If we took skin cells from each male partner and created an embryo, that embryo would still need a surrogate to carry the pregnancy. Unfortunately, Australia has a shortfall of surrogates. International surrogacy provides an alternative, but carries <a href="https://theconversation.com/its-hard-to-find-a-surrogate-in-australia-but-heading-overseas-comes-with-risks-206182">legal, ethical and practical difficulties</a>. Unless access to surrogacy is improved domestically, benefits to male couples will be limited. </p>
<p><strong>5. Who are the legal parents?</strong></p>
<p>In vitro gametogenesis also raises questions about who are the future child’s legal parents. We already see related legal debates surrounding non-traditional families formed through surrogacy, egg donation and sperm donation. </p>
<p>In vitro gametogenesis could theoretically also be used to create children with more than two genetic parents, or with only one. These possibilities likewise require us to update our current understandings of parenthood.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/we-may-one-day-grow-babies-outside-the-womb-but-there-are-many-things-to-consider-first-125709">We may one day grow babies outside the womb, but there are many things to consider first</a>
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</em>
</p>
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<h2>How far is too far?</h2>
<p>Of the potential uses already mentioned, same-sex reproduction is the most controversial. The reproductive limitations imposed by being in a same-sex relationship are sometimes seen as a “social” form of infertility the medical profession is not obligated to fix.</p>
<p>The moral stakes, however, are virtually identical regardless of whether in vitro gametogenesis is used by same-sex or opposite-sex couples. Both uses of the technology fulfil exactly the same goal: helping couples fulfil their desire to have a child genetically related to both parents. It would be unjust to deny access to only one of these groups.</p>
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<a href="https://images.theconversation.com/files/564457/original/file-20231208-21-83z5z9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Same-sex female couple cooking in kitchen, one feeding the other fruit" src="https://images.theconversation.com/files/564457/original/file-20231208-21-83z5z9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/564457/original/file-20231208-21-83z5z9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/564457/original/file-20231208-21-83z5z9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/564457/original/file-20231208-21-83z5z9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/564457/original/file-20231208-21-83z5z9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/564457/original/file-20231208-21-83z5z9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/564457/original/file-20231208-21-83z5z9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Who should have access to this technology? How about same-sex couples?</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/lesbian-couple-cooking-kitchen-together-1071305168">Rawpixel.com/Shutterstock</a></span>
</figcaption>
</figure>
<p>But same-sex reproduction is only the tip of the iceberg. In vitro gametogenesis could theoretically facilitate “<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6973109/">solo reproduction</a>” by deriving both eggs and sperm from the same individual. Interestingly, a child created this way would not be a clone of its parent, since the process of gamete formation would shuffle the parent’s genetic material and create a genetically distinct individual.</p>
<p>Or people could engage in “<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4215291/">multiplex parenting</a>” combining genetic material from more than two individuals. Imagine, for example, that two couples create embryos via IVF. In vitro gametogenesis could then be used to derive eggs and sperm from each of these two separate embryos, which could subsequently be used to conceive a single child that is genetically related to all four adults.</p>
<p>Finally, in vitro gametogenesis could revolutionise prenatal genetic selection. We’d have <a href="https://rmanetwork.com/blog/number-of-eggs-good-ivf-in-vitro-fertilization/">many more embryos</a> than available during regular IVF to screen for genetic diseases and traits.</p>
<p>So it would be urgent to discuss “designer babies”, eugenics, and whether we have a <a href="https://bioedge.org/bioethics-d75/savulescu-interviewed-on-procreative-beneficence/">moral obligation</a> to conceive children with the best chance of a good life.</p>
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Read more:
<a href="https://theconversation.com/worlds-first-synthetic-embryo-why-this-research-is-more-important-than-you-think-188217">World's first 'synthetic embryo': why this research is more important than you think</a>
</strong>
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<h2>We need to start talking about this now</h2>
<p>Both law and ethics can lag behind new technologies, particularly when their implications are as profound and far-reaching as the implications of in vitro gametogenesis.</p>
<p>We need to discuss how this technology should be regulated before it is rolled out. Given how rapidly the science is developing, we should begin this discussion now. </p>
<hr>
<p><em>Laura Smith, a masters student from Monash University, contributed to this article.</em></p><img src="https://counter.theconversation.com/content/219005/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Julian Koplin receives research funding from Ferring Pharmaceuticals for an unrelated project.</span></em></p><p class="fine-print"><em><span>Neera Bhatia receives funding from UKRI Arts and Humanities Research Council for an unrelated project.</span></em></p>The technology may be here sooner than we think. But we have so much to discuss first.Julian Koplin, Lecturer in Bioethics, Monash University & Honorary fellow, Melbourne Law School, Monash UniversityNeera Bhatia, Associate Professor in Law, Deakin UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2063892023-10-18T12:32:09Z2023-10-18T12:32:09ZCOVID-19 vaccine mandates have come and mostly gone in the US – an ethicist explains why their messy rollout matters for trust in public health<figure><img src="https://images.theconversation.com/files/553070/original/file-20231010-15-y48qlo.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C2121%2C1412&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Proof of COVID-19 vaccination was once required to access many venues during the pandemic.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/close-up-hand-of-doctor-put-label-covid-19-vaccine-royalty-free-image/1313591390">skaman306/Moment via Getty Images</a></span></figcaption></figure><p>Ending pandemics is a <a href="https://www.scientificamerican.com/article/people-not-science-decide-when-a-pandemic-is-over1/">social decision, not scientific</a>. Governments and organizations rely on <a href="https://www.science.org/content/article/who-ends-pandemic-emergency-covid-19-deaths-fall">social, cultural and political considerations</a> to decide when to officially declare the end of a pandemic. Ideally, leaders try to minimize the social, economic and public health burden of removing emergency restrictions while maximizing potential benefits.</p>
<p>Vaccine policy is a particularly complicated part of pandemic decision-making, involving a variety of other complex and often contradicting interests and considerations. Although COVID-19 vaccines have <a href="https://doi.org/10.26099/whsf-fp90">saved millions of lives</a> in the U.S., vaccine policymaking throughout the pandemic was often <a href="https://dx.doi.org/10.2139/ssrn.3680832">reactive</a> and <a href="https://doi.org/10.1186/s12889-021-12432-x">politicized</a>.</p>
<p>A late November 2022 Kaiser Family Foundation poll found that <a href="https://www.kff.org/coronavirus-covid-19/poll-finding/kff-covid-19-vaccine-monitor-december-2022/">one-third of U.S. parents</a> believed they should be able to decide not to vaccinate their children at all. The World Health Organization and the United Nations Children’s Fund reported that between 2019 and 2021, global childhood vaccination experienced its <a href="https://www.who.int/news/item/15-07-2022-covid-19-pandemic-fuels-largest-continued-backslide-in-vaccinations-in-three-decades">largest drop</a> in the past 30 years.</p>
<p>The Biden administration formally <a href="https://www.whitehouse.gov/briefing-room/statements-releases/2023/05/01/the-biden-administration-will-end-covid-19-vaccination-requirements-for-federal-employees-contractors-international-travelers-head-start-educators-and-cms-certified-facilities/">removed federal COVID-19 vaccination requirements</a> for federal employees and international travelers in May 2023. Soon after, the U.S. government officially <a href="https://www.cdc.gov/coronavirus/2019-ncov/your-health/end-of-phe.html">ended the COVID-19 public health emergency</a>. But COVID-19’s burden on health systems <a href="https://doi.org/10.1001/jamanetworkopen.2022.1760">continues globally</a>.</p>
<p>I am a <a href="https://scholar.google.com/citations?user=wSbI9hUAAAAJ">public health ethicist</a> who has spent most of my academic career thinking about the ethics of vaccine policies. For as long as they’ve been around, vaccines have been a classic case study in <a href="https://academic.oup.com/phe/pages/vaccination-ethics">public health and bioethics</a>. Vaccines highlight the tensions between <a href="https://doi.org/10.1186%2F1742-7622-3-13">personal autonomy and public good</a>, and they show how the decision of an individual can have <a href="https://doi.org/10.1073/pnas.1731324100">populationwide consequences</a>. </p>
<p>COVID-19 is <a href="https://www.unc.edu/discover/covid-19-has-become-endemic/">here to stay</a>. Reflecting on the ethical considerations surrounding the rise – and unfolding fall – of COVID-19 vaccine mandates can help society better prepare for future disease outbreaks and pandemics.</p>
<h2>Ethics of vaccine mandates</h2>
<p>Vaccine mandates are the <a href="https://doi.org/10.1136%2Fbmjgh-2020-004877">most restrictive form</a> of vaccine policy in terms of personal autonomy. Vaccine policies can be <a href="https://doi.org/10.1016/j.vaccine.2018.10.019">conceptualized as a spectrum</a>, ranging from least restrictive, such as passive recommendations like informational advertisements, to most restrictive, such as a vaccine mandate that fines those who refuse to comply. </p>
<p>Each sort of vaccine policy also has different forms. Some recommendations <a href="https://doi.org/10.1016/j.lana.2022.100205">offer incentives</a>, perhaps in the form of a monetary benefit, while others are only a <a href="https://doi.org/10.2105%2FAJPH.2014.302425">verbal recommendation</a>. Some vaccine mandates are mandatory in name only, with <a href="https://www.wsj.com/articles/enforcing-vaccine-mandates-is-messy-business-11630582742">no practical consequences</a>, while others may trigger <a href="https://www.wusf.org/health-news-florida/2022-12-27/thousands-of-workers-were-fired-over-vaccine-mandates-for-some-the-fight-goes-on">termination of employment</a> upon noncompliance. </p>
<p>COVID-19 vaccine mandates took many forms throughout the pandemic, including but not limited to <a href="https://www.commonwealthfund.org/blog/2021/covid-19-vaccine-mandates-and-incentives-under-federal-law">employer mandates</a>, <a href="https://nashp.org/states-address-school-vaccine-mandates-and-mask-mandates/">school mandates</a> and <a href="https://www.kff.org/coronavirus-covid-19/issue-brief/key-questions-about-covid-19-vaccine-passports-and-the-u-s/">vaccination certificates</a> – often referred to as <a href="https://www.nytimes.com/2021/02/04/travel/coronavirus-vaccine-passports.html">vaccine passports</a> or <a href="https://doi.org/10.1016/S1473-3099(20)30766-0">immunity passports</a> – required for travel and participation in public life.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/553072/original/file-20231010-21-irjnph.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Sign on window reading 'New York City requires you to be vaccinated against COVID-19 to enter this business,' with a person sitting at a desk inside the room" src="https://images.theconversation.com/files/553072/original/file-20231010-21-irjnph.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/553072/original/file-20231010-21-irjnph.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/553072/original/file-20231010-21-irjnph.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/553072/original/file-20231010-21-irjnph.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/553072/original/file-20231010-21-irjnph.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/553072/original/file-20231010-21-irjnph.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/553072/original/file-20231010-21-irjnph.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">COVID-19 vaccine requirements were intended to protect the health and safety of the public.</span>
<span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/VirusOutbreak/409216582fb54b8f9f74c207206f789e">Seth Wenig/AP Photo</a></span>
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<p>Because of ethical considerations, vaccine mandates are typically <a href="https://doi.org/10.1111/bioe.13141">not the first option</a> policymakers use to maximize vaccine uptake. Vaccine mandates are <a href="https://doi.org/10.1016/j.vaccine.2018.10.019">paternalistic by nature</a> because they limit freedom of choice and bodily autonomy. Additionally, because some people may see vaccine mandates as invasive, they could potentially create challenges in maintaining and garnering trust in public health. This is why mandates are usually the last resort. </p>
<p>However, vaccine mandates <a href="https://doi.org/10.1111/bioe.13141">can be justified</a> from a public health perspective on multiple grounds. They’re a <a href="https://doi.org/10.1016%2FS0140-6736(22)00875-3">powerful and effective</a> public health intervention. </p>
<p>Mandates can provide <a href="https://doi.org/10.1016/S0140-6736(22)00875-3">lasting protection</a> against infectious diseases in various communities, including schools and health care settings. They can provide a public good by ensuring widespread vaccination to reduce the chance of outbreaks and disease transmission overall. Subsequently, an increase in community vaccine uptake due to mandates can protect immunocompromised and vulnerable people who are at higher risk of infection.</p>
<h2>COVID-19 vaccine mandates</h2>
<p>Early in the pandemic, <a href="https://www.brookings.edu/articles/vaccine-mandates-are-more-popular-than-you-think/">arguments in favor</a> of mandating COVID-19 vaccines for adults rested primarily on evidence that COVID-19 vaccination prevented disease transmission. In 2020 and 2021, COVID-19 vaccines seemed to have a <a href="https://doi.org/10.1093%2Fcid%2Fciab079">strong effect on reducing transmission</a>, therefore justifying vaccine mandates. </p>
<p>COVID-19 also <a href="https://doi.org/10.1007%2Fs40615-021-01170-w">posed a disproportionate threat</a> to vulnerable people, including the immunocompromised, older adults, people with chronic conditions and poorer communities. As a result, these groups would have <a href="https://doi.org/10.1371%2Fjournal.pmed.1004086">significantly benefited</a> from a reduction in COVID-19 outbreaks and hospitalization.</p>
<p>Many researchers found <a href="https://doi.org/10.1377/forefront.20211029.682797">personal liberty and religious objections insufficient</a> to prevent mandating COVID-19 vaccines. Additionally, decision-makers in favor of mandates appealed to the COVID-19 vaccine’s ability to <a href="https://pubmed.ncbi.nlm.nih.gov/34924609">reduce disease severity and therefore hospitalization rates</a>, alleviating the pressure on overwhelmed health care facilities. </p>
<p>However, the emergence of <a href="https://theconversation.com/what-is-the-new-covid-19-variant-ba-2-and-will-it-cause-another-wave-of-infections-in-the-us-179619">even more transmissible variants</a> of the virus dramatically changed the decision-making landscape surrounding COVID-19 vaccine mandates.</p>
<p>The public health intention (and ethicality) of original COVID-19 vaccine mandates became less relevant as the scientific community understood that achieving herd immunity against COVID-19 was <a href="https://doi.org/10.1038/d41586-021-00728-2">probably impossible</a> because of uneven vaccine uptake, and <a href="https://doi.org/10.1038/d41586-022-00283-4">breakthrough infections</a> among the vaccinated became more common. Many countries like <a href="https://doi.org/10.1136/bmj.o353">England</a> and <a href="https://www.venable.com/insights/publications/2022/02/as-the-federal-vaccine-mandates-fall-one-by-one">various states in the U.S.</a> started to roll back COVID-19 vaccine mandates.</p>
<p>With the rollback and removal of vaccine mandates, decision-makers are still left with important policy questions: Should vaccine mandates be dismissed, or is there still sufficient ethical and scientific justification to keep them in place?</p>
<p>Vaccines are lifesaving medicines that can help everyone eligible to receive them. But vaccine mandates are context-dependent tools that require considering the time, place and population they are deployed in. </p>
<p>Though COVID-19 vaccine mandates are less of a publicly pressing issue today, many other vaccine mandates, <a href="https://www.nytimes.com/2022/12/16/health/vaccines-public-opinion.html">particularly in schools</a>, are currently being challenged. I believe this is a reflection of decreased trust in public health authorities, institutions and researchers – resulting in part from <a href="https://theconversation.com/18-months-of-the-covid-19-pandemic-a-retrospective-in-7-charts-166881">tumultuous decision-making</a> during the COVID-19 pandemic.</p>
<p>Engaging in transparent and honest conversations surrounding vaccine mandates and other health policies can help rebuild and foster trust in public health institutions and interventions.</p><img src="https://counter.theconversation.com/content/206389/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Rachel Gur-Arie does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Vaccine policies fall on a spectrum, from mandates to recommendations. Deciding what to use and when is not so much a science but a balancing act between personal autonomy and public good.Rachel Gur-Arie, Assistant Professor of Nursing and Health Innovation, Arizona State UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2109772023-08-03T22:55:35Z2023-08-03T22:55:35ZSettlement with family of Henrietta Lacks is an opportunity to reflect on inequalities in genetic research<figure><img src="https://images.theconversation.com/files/541109/original/file-20230803-13675-21nu34.jpg?ixlib=rb-1.1.0&rect=487%2C235%2C9419%2C5975&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The HeLa line of immortal human epithelial cancer cells was derived from cells taken from Henrietta Lacks when she was a cancer patient in 1951.</span> <span class="attribution"><a class="source" href="https://wellcomecollection.org/works/gcca8tem/images?id=d8e6c69g"> (Wellcome Collection: Anne Weston, Francis Crick Institute)</a>, <a class="license" href="http://creativecommons.org/licenses/by-nc/4.0/">CC BY-NC</a></span></figcaption></figure><iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/settlement-with-family-of-henrietta-lacks-is-an-opportunity-to-reflect-on-inequalities-in-genetic-research" width="100%" height="400"></iframe>
<p>Aug. 1, 2023 would have been Henrietta Lacks’s 103rd birthday. It was also the day the Lacks family <a href="https://bencrump.com/press/attorneys-ben-crump-chris-seeger-and-family-of-henrietta-lacks-announce-settlement-on-what-would-have-been-her-103rd-birthday/">reached a settlement</a> with Thermo Fisher Scientific, the biotech company that used and profited from her <a href="https://osp.od.nih.gov/hela-cells/">“HeLa” cells</a>. </p>
<p>Though the details remain confidential, this settlement is a long-awaited moment of justice and victory for Lacks and her family. </p>
<p>Lacks’s story is well known and <a href="https://www.imdb.com/title/tt5686132/">has since been popularized</a> in an HBO film, but it is viewed as a tale of the past. However, the inequalities suffered by Lacks remain problems of the present. As a legal researcher and woman of colour, I have found that these problems are still alive and kicking today. </p>
<p>Genetic research (and medical practice more generally) are filled with <a href="https://doi.org/10.1377/hlthaff.2021.01466">systemic racism</a>, <a href="https://doi.org/10.1001%2Fjama.291.24.2985">racial discrimination</a> and <a href="https://doi.org/10.1093/infdis/jiz214">unconscious biases</a>. For many Black, Indigenous and Peoples of Colour (BIPOCs), <a href="https://papers.ssrn.com/sol3/papers.cfm?abstract_id=2186003">the battle for an equitable framework</a> is not over yet.</p>
<h2>Henrietta Lacks’s story</h2>
<p><a href="https://hela100.org/herstory">Lacks</a> was a Black tobacco farmer living in Baltimore, Md. and undergoing treatment in 1951 for cervical cancer at Johns Hopkins University Hospital, one of the only hospitals that treated Black patients from lower socioeconomic backgrounds. </p>
<figure class="align-right ">
<img alt="Illustration of a young Black woman" src="https://images.theconversation.com/files/541122/original/file-20230803-27-50m3j1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/541122/original/file-20230803-27-50m3j1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=605&fit=crop&dpr=1 600w, https://images.theconversation.com/files/541122/original/file-20230803-27-50m3j1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=605&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/541122/original/file-20230803-27-50m3j1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=605&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/541122/original/file-20230803-27-50m3j1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=760&fit=crop&dpr=1 754w, https://images.theconversation.com/files/541122/original/file-20230803-27-50m3j1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=760&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/541122/original/file-20230803-27-50m3j1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=760&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Henrietta Lacks’s cells, taken from a tumour in 1951 while she was undergoing treatment for cervical cancer, had the innate ability to survive, divide and grow indefinitely.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
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</figure>
<p>Her cells were taken and retained for research purposes by white physicians and researchers at the hospital. Lacks’s cells, unlike others, had the innate ability to survive, divide and grow indefinitely. Viewed as extremely valuable in research, the researchers patented “HeLa,” the first immortalized human cell line.</p>
<p>“HeLa” — derived from the first two letters of her first and last names — is the <a href="https://www.hopkinsmedicine.org/henriettalacks/">oldest and most commonly used human cell line</a>. It has since contributed to many lifesaving endeavours, including <a href="https://www.hopkinsmedicine.org/henrietta-lacks/importance-of-hela-cells#:%7E:text=Among%20the%20important%20scientific%20discoveries,Dr.%20George%20Gey%20in%201951.">the development of polio and COVID-19 vaccines</a>.</p>
<p>Although Lacks passed away from cervical cancer in 1951, her story has only been widely told in recent years. It was <a href="https://rebeccaskloot.com/the-immortal-life/about-the-book/">Rebecca Skloot’s 2010 book <em>The Immortal Life of Henrietta Lacks</em></a> that drew attention to Lacks’s story and highlighted the racialized and patriarchal nature of medical ethics and research practices.</p>
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Read more:
<a href="https://theconversation.com/quebecs-cultural-awareness-training-makes-flawed-assumptions-that-do-not-prioritize-the-safety-of-indigenous-people-207973">Québec's cultural awareness training makes flawed assumptions that do not prioritize the safety of Indigenous people</a>
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<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/541112/original/file-20230803-29-fpyrml.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Microscopic image of cells dyed blue and yellow" src="https://images.theconversation.com/files/541112/original/file-20230803-29-fpyrml.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/541112/original/file-20230803-29-fpyrml.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=600&fit=crop&dpr=1 600w, https://images.theconversation.com/files/541112/original/file-20230803-29-fpyrml.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=600&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/541112/original/file-20230803-29-fpyrml.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=600&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/541112/original/file-20230803-29-fpyrml.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=754&fit=crop&dpr=1 754w, https://images.theconversation.com/files/541112/original/file-20230803-29-fpyrml.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=754&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/541112/original/file-20230803-29-fpyrml.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=754&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">HeLa cells have contributed to many lifesaving endeavours, including the polio vaccine and COVID-19 vaccines.</span>
<span class="attribution"><a class="source" href="https://wellcomecollection.org/works/ggvfrruv/images?id=n25nu44b">(Wellcome Collection: Kevin Mackenzie, University of Aberdeen)</a>, <a class="license" href="http://creativecommons.org/licenses/by-nc/4.0/">CC BY-NC</a></span>
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</figure>
<p>Since then, Johns Hopkins University has established <a href="https://urbanhealth.jhu.edu/what-we-do/henrietta-lacks-memorial-award">a memorial award</a> and <a href="https://giving.jhu.edu/building-community/henrietta-lacks/">university building</a> in her name. The World Health Organization has also <a href="https://www.who.int/news/item/13-10-2021-who-director-general-bestows-posthumous-award-on-the-late-henrietta-lacks">bestowed a posthumous award</a> to Lacks for her contributions to medical science. </p>
<p>These actions, however, have only recently been taken. Advocates — mainly people of colour — used the pandemic and subsequent COVID-19 vaccine developments to <a href="https://doi.org/10.1038/d41586-020-02494-z">bring Lacks’s story back to life</a>.</p>
<h2>Not just her: Other stories of inequality</h2>
<p>Another story often told alongside Lacks’s is that of John Moore, who <a href="https://law.justia.com/cases/california/supreme-court/3d/51/120.html">fought for property rights over his cells</a>. Moore had hairy cell leukemia and, as part of his treatment, underwent a splenectomy at the University of California Los Angeles Medical Centre in 1976. Like Lacks’s, Moore’s cells had been <a href="https://www.latimes.com/archives/la-xpm-2001-oct-13-me-56770-story.html">unknowingly and unlawfully processed and patented as the “Mo” cell line</a>.</p>
<p>But unlike Lacks — at least, until now — Moore received damages. In 1990, the Supreme Court of California decided that, although Moore did not have a property claim, his doctor breached a fiduciary duty to Moore by not obtaining proper informed consent. This decision has since been taught in <a href="https://digitalcommons.osgoode.yorku.ca/cgi/viewcontent.cgi?article=1407&context=scholarly_works">property law classes</a> across Canada and the United States.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/541113/original/file-20230803-21-meiwg8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A man standing a microphone holding a child, surrounded by a group of people." src="https://images.theconversation.com/files/541113/original/file-20230803-21-meiwg8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/541113/original/file-20230803-21-meiwg8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=402&fit=crop&dpr=1 600w, https://images.theconversation.com/files/541113/original/file-20230803-21-meiwg8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=402&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/541113/original/file-20230803-21-meiwg8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=402&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/541113/original/file-20230803-21-meiwg8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=506&fit=crop&dpr=1 754w, https://images.theconversation.com/files/541113/original/file-20230803-21-meiwg8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=506&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/541113/original/file-20230803-21-meiwg8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=506&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Attorney Ben Crump, centre, holds Zayden Joseph, age 6, the great-grandson of Henrietta Lacks, while standing with attorneys and other descendants of Lacks outside the federal courthouse in Baltimore, Md. on Oct. 4, 2021. They announced during a news conference that Lacks’s estate is filing a lawsuit against Thermo Fisher Scientific for using Lacks’s cells, known as HeLa cells.</span>
<span class="attribution"><span class="source">(AP Photo/Steve Ruark)</span></span>
</figcaption>
</figure>
<p>These stories were covered and received in starkly different ways. Though <a href="https://www.nytimes.com/1990/07/10/science/patient-s-right-to-tissue-is-limited.html">Moore’s story was told in a timely manner</a>, Lacks’s story was not. But for her family and Skloot’s journalism, the injustices experienced by a Black woman would have been easily overlooked.</p>
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Read more:
<a href="https://theconversation.com/collaborative-indigenous-research-is-a-way-to-repair-the-legacy-of-harmful-research-practices-193912">Collaborative Indigenous Research is a way to repair the legacy of harmful research practices</a>
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<p>Another case is the <a href="https://casetext.com/case/havasupai-tribe-v-arizona-bd-of-regents">Havasupai tribe’s lawsuit against the Arizona Board of Regents</a>. Blood samples from the tribe were obtained for research on <a href="https://doi.org/10.1177%2F0162243912470009">inherited diabetes</a>. The samples were later <a href="https://doi.org/10.1001/virtualmentor.2011.13.2.hlaw1-1102">unlawfully used for other research</a>, including studies on inbreeding and schizophrenia. This violated the Havasupai’s consent agreement and had deeper repercussions, as these topics were considered taboo by the tribe.</p>
<h2>The fight isn’t over yet</h2>
<p>News of the Lacks family’s settlement should be celebrated. But it should also serve as a reminder that the fight for a fairer and more equitable framework of medical ethics and genetic research is not over. </p>
<p>Genetic materials are generally <a href="https://link.springer.com/article/10.1023/B:ETIN.0000036157.14807.b0#citeas">treated like any other objects</a> and <a href="https://papers.ssrn.com/sol3/papers.cfm?abstract_id=2463829">little to no consideration is given to the <em>person</em>.</a> This perpetuates existing systemic inequalities and racial harm in the fields of medicine and scientific research. </p>
<p>Ben Crump, attorney for the Lacks family, said in a <a href="https://youtu.be/tW24oeRKnKQ">news conference that</a> “not only were the HeLa cells derived from Henrietta Lacks — the HeLa cells are Henrietta Lacks.” We can continue Lacks’s fight by continuing to raise awareness and advocating for the <em>people</em>, and not just the cells.</p><img src="https://counter.theconversation.com/content/210977/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Aileen Editha does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The settlement is a long-awaited moment of victory for Henrietta Lacks and her family. But the battle for justice in genetic and medical research is not over yet.Aileen Editha, PhD Candidate in Law, Queen's University, OntarioLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2082762023-07-13T12:37:38Z2023-07-13T12:37:38ZPromising assisted reproductive technologies come with ethical, legal and social challenges – a developmental biologist and a bioethicist discuss IVF, abortion and the mice with two dads<figure><img src="https://images.theconversation.com/files/534595/original/file-20230628-23-se3fkd.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C2000%2C1500&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A few days after successful fertilization, an embryo becomes a rapidly dividing ball of cells called a blastocyst.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/illustration/blastocyst-embryo-illustration-royalty-free-illustration/1498384521">Juan Gaertner/Science Photo Library via Getty Images</a></span></figcaption></figure><p><em>Assisted reproductive technologies are medical procedures that help people experiencing difficulty having or an inability to have biological children of their own. From in vitro fertilization to genetic screening to creation of viable eggs from the <a href="https://doi.org/10.1038/s41586-023-05834-x">skin cells of two male mice</a>, each new development speaks to the potential of reproductive technologies to expand access to the experience of pregnancy.</em> </p>
<p><em>Translating advances from the lab to the clinic, however, comes with challenges that go far beyond the purely technical.</em></p>
<p><em>Conversations around the ethics and implications of cutting-edge research often happen after the fact, when the science and technology have advanced beyond the point at which open dialogue could best protect affected groups. In the spirit of starting such cross-discipline conversations earlier, we invited developmental biologist <a href="https://scholar.google.com/citations?user=i6SghEMAAAAJ&hl=en">Keith Latham</a> of Michigan State University and bioethicist <a href="https://www.researchgate.net/profile/Mary-Faith-Marshall">Mary Faith Marshall</a> of the University of Virginia to discuss the ethical and technological potential of <a href="https://www.npr.org/sections/health-shots/2023/05/27/1177191913/sperm-or-egg-in-lab-breakthrough-in-reproduction-designer-babies-ivg">in vitro gametogenesis</a> and assisted reproductive technology post-Roe.</em></p>
<h2>How new are the ethical considerations raised by assisted reproductive technologies?</h2>
<p><strong>Keith</strong></p>
<p>Every new technology raises many of the same questions, and likely new ones. On the safety and risk-benefit side of the ethical conversation, there’s nothing here that we haven’t dealt with since the 1970s with other reproductive technologies. But it’s important to keep asking questions, because the benefits are hugely dependent on the success rate. There are potential biological costs, but also possible social costs, financial costs, societal costs and many others.</p>
<p><strong>Mary Faith</strong> </p>
<p>It’s probably been that way even longer. One of my mentors, Joseph Francis Fletcher, a pioneering bioethicist and Episcopal priest, wrote a book called “<a href="https://press.princeton.edu/books/hardcover/9780691635224/morals-and-medicine">Morals and Medicine</a>” in 1954. It was the first non-Roman Catholic treatment of bioethics. And he raised a lot of these issues there, including the <a href="https://theconversation.com/jurassic-world-scientists-still-havent-learned-that-just-because-you-can-doesnt-mean-you-should-real-world-genetic-engineers-can-learn-from-the-cautionary-tale-184369">technological imperative</a> – the idea that because we can develop the technology to do something, we therefore should develop it.</p>
<p>Fletcher also said that the use of artifice, or human-made creations, is supremely human. That’s what we do: We figure out how things work and we develop new technologies like vaccines and heart-lung machines based on evolving scientific knowledge.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/534596/original/file-20230628-30-nfjlun.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Microscopy image of mouse ovum being fertilized by mouse sperm" src="https://images.theconversation.com/files/534596/original/file-20230628-30-nfjlun.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/534596/original/file-20230628-30-nfjlun.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=388&fit=crop&dpr=1 600w, https://images.theconversation.com/files/534596/original/file-20230628-30-nfjlun.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=388&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/534596/original/file-20230628-30-nfjlun.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=388&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/534596/original/file-20230628-30-nfjlun.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=487&fit=crop&dpr=1 754w, https://images.theconversation.com/files/534596/original/file-20230628-30-nfjlun.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=487&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/534596/original/file-20230628-30-nfjlun.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=487&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Scientists were able to create a mouse egg from the skin cells of male mice.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/fertilization-of-mouse-ovum-royalty-free-image/523741410">Clouds Hill Imaging Ltd./Corbis Documentary via Getty Images</a></span>
</figcaption>
</figure>
<p>I think that in most cases, scientists should be involved in thinking about the implications of their work. But often, researchers focus more on the direct applications of their work than the potential indirect consequences. </p>
<p>Given the evolution of assisted reproductive technology, and the fact that its evolution is going to continue, I think one of the central questions to consider is, what are the goals of developing it? For assisted reproduction, it’s to help infertile people and people in nontraditional relationships have children.</p>
<h2>What are some recent developments in the field of assisted reproductive technology?</h2>
<p><strong>Keith</strong></p>
<p>One recent advance in assisted reproductive technology is the expansion of <a href="https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2020/03/preimplantation-genetic-testing">pre-implantation genetic testing</a> methods, particularly DNA sequencing. Many genes come in different variants, or alleles, that can be inherited from each parent. Providers can determine whether an embryo bears a “bad” allele that may increase the risk of certain diseases and select embryos with “healthy” alleles.</p>
<p>Genetic screening <a href="https://doi.org/10.1016/j.fertnstert.2022.03.017">raises several ethical concerns</a>. For example, the parents’ genetic profiles could be unwillingly inferred from that of the embryo. This possibility may deter prospective parents from having children, and such knowledge may also have potential effects on any future child. The cost of screening and potential need for additional cycles of IVF may also increase disparities.</p>
<p>There are also considerations about the <a href="https://doi.org/10.1016/j.fertnstert.2022.03.019">accuracy of screening predictions</a> without accounting for environmental effects, and what <a href="https://doi.org/10.1007/s12687-021-00573-w">level of genetic risk</a> is “serious” enough for an embryo to be excluded. More extensive screening also raises concerns about possible misuse for purposes other than disease prevention, such as production of “<a href="https://theconversation.com/an-american-company-will-test-your-embryos-for-genetic-defects-but-designer-babies-arent-here-just-yet-126833">designer babies</a>.”</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/uhb5gd5B-7g?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">In vitro gametogenesis involves making egg or sperm cells from other adult cells in the body.</span></figcaption>
</figure>
<p>At a <a href="https://www.nationalacademies.org/news/2023/02/agenda-for-third-international-summit-on-human-genome-editing-march-6-8">genome-editing conference</a> in March 2023, researchers announced that they were able to <a href="https://doi.org/10.1038/s41586-023-05834-x">delete and duplicate whole chromosomes</a> from the skin cells of male mice to make eggs. This method is one potential way to make eggs that do not carry genetic abnormalities. </p>
<p>They were very upfront that this was done at 1% efficiency in mice, which could be lower in humans. That means something bad happened to 99% of the embryos. The biological world is not typically binary, so a portion of that surviving 1% could still be abnormal. Just because the mice survived doesn’t mean they’re OK. I would say at this point, it would be unethical to try this on people.</p>
<p>As with some forms of genetic screening, using this technique to reduce the risk of one disease could inadvertently increase the risk of another. Determining that it is absolutely safe to duplicate a chromosome would require knowing every allele of every gene on that chromosome, and what each allele could do to the health of a person. That’s a pretty tall order, as that could involve identifying hundreds to thousands of genes, and the effects of all their variants may not be known. </p>
<p><strong>Mary Faith</strong></p>
<p>That raises the issue of efficacy and costs to yet another order of magnitude.</p>
<p><strong>Keith</strong> </p>
<p>Genome editing with <a href="https://theconversation.com/human-genome-editing-offers-tantalizing-possibilities-but-without-clear-guidelines-many-ethical-questions-still-remain-200983">CRISPR technology</a> in people carries similar concerns. Because of potential limitations in how precise the technology can be, it may be difficult for researchers to say they are absolutely 100% certain there won’t be off-target changes in the genome. Proceeding without that full knowledge could be risky. </p>
<p>But that’s where bioethicists need to come into play. Researchers don’t know what the full risk is, so how do you make that risk-benefit calculation?</p>
<p><strong>Mary Faith</strong></p>
<p>There’s the option of a voluntary global moratorium on using these technologies on human embryos. But somebody somewhere is <a href="https://theconversation.com/did-he-jiankui-make-people-better-documentary-spurs-a-new-look-at-the-case-of-the-first-gene-edited-babies-196714">still going to do it</a>, because the technology is just sitting there, waiting to be moved forward.</p>
<h2>How will the legal landscape affect the development and implementation of assisted reproductive technologies?</h2>
<p><strong>Mary Faith</strong></p>
<p>Any research that involves human embryos is in some ways politicized. Not only because the <a href="https://doi.org/10.1038/d41586-020-00127-z">government provides funding</a> to the basic science labs that conduct this research, but because of the wide array of beliefs that members of the public at large have about <a href="https://theconversation.com/defining-when-human-life-begins-is-not-a-question-science-can-answer-its-a-question-of-politics-and-ethical-values-165514">when life begins</a> or <a href="https://theconversation.com/what-is-personhood-the-ethics-question-that-needs-a-closer-look-in-abortion-debates-182745">what personhood means</a>.</p>
<p>The <a href="https://theconversation.com/roe-overturned-what-you-need-to-know-about-the-supreme-court-abortion-decision-184692">Dobbs decision</a>, which overturned the constitutional right to an abortion, has implications for assisted reproduction and beyond. Most people who are pregnant don’t even know they’re pregnant at the earliest stages, and somewhere around <a href="https://theconversation.com/most-human-embryos-naturally-die-after-conception-restrictive-abortion-laws-fail-to-take-this-embryo-loss-into-account-187904">60% of those pregnancies end naturally</a> because of genetic aberrations. Between 1973 and 2005, <a href="https://doi.org/10.1215/03616878-1966324">over 400 women were arrested for miscarriage in the U.S.</a>, and I think that number is going to grow. The implications for reproductive health care, and for assisted reproduction in the future, are challenging and frightening.</p>
<p>What will abortion restrictions mean for people who have <a href="https://www.cdc.gov/art/key-findings/multiple-births.html">multiple-gestation pregnancies</a>, in which they carry more than one embryo at the same time? In order to have one healthy child born from that process, the other embryos often need to be removed so they don’t all die. In the past 40 years, the number of twin births doubled and triplet and higher-order births quadrupled, primarily because of fertility treatments. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/534477/original/file-20230628-27-v0r0uc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Needle touching eggs in petri dish under microscope in IVF" src="https://images.theconversation.com/files/534477/original/file-20230628-27-v0r0uc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/534477/original/file-20230628-27-v0r0uc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/534477/original/file-20230628-27-v0r0uc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/534477/original/file-20230628-27-v0r0uc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/534477/original/file-20230628-27-v0r0uc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/534477/original/file-20230628-27-v0r0uc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/534477/original/file-20230628-27-v0r0uc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">IVF may involve transferring more than one embryo at a time.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/in-vitro-fertilization-royalty-free-image/1272954210">Antonio Marquez lanza/Moment via Getty Images</a></span>
</figcaption>
</figure>
<p><strong>Keith</strong> </p>
<p>IVF may transfer one, two, or sometimes three embryos at a time. The <a href="https://doi.org/10.1016/j.jpeds.2022.11.038">cost of care for preterm birth</a>, which is one possible outcome of multiple-gestation pregnancies, can be high. That’s in addition to the <a href="https://doi.org/10.1016/j.ajog.2013.10.005">cost of delivery</a>. IVF clinics are increasingly transferring just one embryo to mitigate such concerns.</p>
<p>The life-at-conception bills that have been put forth in some U.S. state legislatures and Congress may contain language claiming they are not meant to prevent IVF. But the language of the bills could be extended to affect procedures such as IVF with pre-implantation genetic testing to detect chromosomal abnormalities, particularly when single-embryo transfer is the goal. Pre-implantation genetic testing has been increasing, with one study estimating that <a href="https://doi.org/10.1001/jama.2022.1892">over 40% of all IVF cycles</a> in the U.S. in 2018 involved genetic screening. </p>
<p>Could life-at-conception bills criminalize clinics that don’t transfer embryos known to be genetically abnormal? Freezing genetically abnormal embryos could avoid destroying them, but that raises questions of, to what end? Who would pay for the storage, and who would be responsible for those embryos?</p>
<h2>How can we determine whether the risks outweigh the benefits when so much is unknown?</h2>
<p><strong>Keith</strong></p>
<p>Conducting studies in animal models is an important first step. In some cases, it either hasn’t been done or hasn’t been done extensively. Even with animal studies, you have to recognize that mice, rabbits and monkeys are not human. Animal models may reduce some risks before a technology is used in people, but they won’t eliminate all risks, because of biological differences between species.</p>
<p><strong>Mary Faith</strong> </p>
<p>We could look to the example of <a href="https://www.genome.gov/25520302/online-education-kit-1972-first-recombinant-dna">early recombinant DNA research in the U.S.</a> The federal government created the <a href="https://doi.org/10.1089%2Fhum.2013.2524">Recombinant DNA Advisory Committee at the National Institutes of Health</a> to oversee animal and early-phase human research involving synthetic or hybrid genetic material. </p>
<p>The <a href="https://doi.org/10.1126/science.307.5712.1028b">death of Jesse Gelsinger</a>, who was a participant in a gene therapy clinical trial in 1999, led to a halt in all gene therapy clinical trials in the U.S. for a time. When the Food and Drug Administration investigated what went wrong, they found huge numbers of adverse events in both humans and animals that should have been reported to the advisory committee but weren’t. Notably, the principal investigator of the trial was also the <a href="https://sciencehistory.org/stories/magazine/the-death-of-jesse-gelsinger-20-years-later/">primary shareholder</a> of the biotech company that made the drug being tested. That raises questions about the reality of oversight.</p>
<p>I think something like that earlier NIH advisory committee but for reproductive technologies would still be advisable. But researchers, policymakers and regulators need to learn from the lessons of the past to try to ensure that – especially in early-phase research – we’re very thoughtful about the potential risks and that research participants really understand what the implications are for participation in research. That would be one model for translating research from the animal into the human.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/534481/original/file-20230628-30590-2nwhy8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Child looking into a slip lamp microscope for an eye exam with a doctor" src="https://images.theconversation.com/files/534481/original/file-20230628-30590-2nwhy8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/534481/original/file-20230628-30590-2nwhy8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/534481/original/file-20230628-30590-2nwhy8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/534481/original/file-20230628-30590-2nwhy8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/534481/original/file-20230628-30590-2nwhy8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/534481/original/file-20230628-30590-2nwhy8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/534481/original/file-20230628-30590-2nwhy8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">The FDA approved a gene therapy for a form of congenital vision loss in 2017. The child in this photo, then 8, first received gene therapy at age 4.</span>
<span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/BlindnessTreatmentPrice/c567cc3a2b244cac8afc2b5ae2c62ca3">Bill West/AP Photo</a></span>
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</figure>
<p><strong>Keith</strong></p>
<p>A process to make sure that the people conducting studies don’t have a conflict of interest, like having the potential to commercially profit from the technology, would be useful. </p>
<p>Caution, consensus and cooperation should not take second place to profit motives. Altering the human genome in a way that allows human-made genetic changes to be <a href="https://doi.org/10.1089/crispr.2020.0096">propagated throughout the population</a> has a potential to alter the genetics of the human species as a whole. </p>
<p><strong>Mary Faith</strong></p>
<p>That raises the question of how long it will take for long-term effects to show. It’s one thing for an implanted egg not to survive. But how long will it take to know whether there are effects that aren’t obvious at birth?</p>
<p><strong>Keith</strong> </p>
<p>We’re still collecting long-term outcome data for people born using different reproductive technologies. So far there have been no obviously horrible consequences. But some abnormalities could take decades to manifest, and there are many variables to contend with. </p>
<p>One can arguably say that there’s substantial good in helping couples have babies. There can be a benefit to their emotional well-being, and reproduction is a natural part of human health and biology. And a lot of really smart, dedicated people are putting a lot of energy into making sure that the risks are minimized. We can also look to some of the practices and approaches to oversight that have been used over the past several decades.</p>
<p><strong>Mary Faith</strong></p>
<p>And thinking about international guidelines, such as from the <a href="https://cioms.ch">Council for International Medical Science</a> and other groups, could provide guidance on protecting human research subjects.</p>
<p><strong>Keith</strong></p>
<p>You hate to advocate for a world where the automatic response to anything new is “no, don’t do that.” My response is, “Show me it’s safe before you do it.” I don’t think that’s unreasonable.</p>
<p>Some people have a view that scientists don’t think about the ethics of research and what’s right and wrong, advisable or inadvisable. But we do think about it. I co-direct a research training program that includes teaching scientists how to responsibly and ethically conduct research, including speakers who specifically address the ethics of reproductive technologies. It is valuable to have a dialogue between scientists and ethicists, because ethicists will often think about things from a different perspective. </p>
<p>As people go through their scientific careers and see new technologies unfold over time, these discussions can help them develop a deeper appreciation and understanding of the broader impact of their research. It becomes our job to make sure that each generation of scientists is motivated to think about these things. </p>
<p><strong>Mary Faith</strong></p>
<p>It’s also really important to include stakeholders – people who are nonscientists, people who experience barriers to reproduction and people who are opposed to the idea – so they have a voice at the table as well. That’s how you get good policies, right? You have everyone who should be at the table, at the table.</p><img src="https://counter.theconversation.com/content/208276/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Scientists can create viable eggs from two male mice. In the wake of CRISPR controversies and restrictive abortion laws, two experts start a dialogue on ethical research in reproductive biology.Keith Latham, Professor of Animal Science, Adjunct Professor of Obstetrics, Gynecology and Reproductive Biology, Michigan State UniversityMary Faith Marshall, Professor of Biomedical Ethics, University of VirginiaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2088372023-07-04T02:16:52Z2023-07-04T02:16:52ZShould terminally ill young people be able to choose voluntary assisted dying? The ACT is considering it<figure><img src="https://images.theconversation.com/files/535235/original/file-20230703-246284-7e1hli.jpg?ixlib=rb-1.1.0&rect=17%2C4%2C2977%2C1985&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/little-girl-sick-her-hand-hold-771736510">Shutterstock</a></span></figcaption></figure><p>The ACT Labor-Greens government is currently considering legalising voluntary assisted dying, as has recently occurred in all six Australian states. But the results of community consultation on the <a href="https://hdp-au-prod-app-act-yoursay-files.s3.ap-southeast-2.amazonaws.com/5016/8791/2515/FINAL_Listening_Report_VAD_for_publication_on_YourSay_-_27.06.23.pdf">topic</a> suggest the ACT’s proposed legislation may differ in significant respects from the <a href="https://eprints.qut.edu.au/238547/">model</a> adopted by other Australian states and territories. </p>
<p>One controversial difference is the <a href="https://www.theaustralian.com.au/nation/politics/teens-as-young-as-14-could-access-voluntary-assisted-dying-in-the-act/news-story/44dfd2f135c71e2f88d4603275ed794b">proposal</a> to allow people under 18 to access voluntary assisted dying if they have a terminal illness. </p>
<p>The ACT proposes not setting a minimum age requirement for access to voluntary assisted dying. Instead, as is the case with other areas of medical treatment, the decision-making capacity of people under the age of 18 would be assessed on a case-by-case basis by medical practitioners. </p>
<p>If they are assessed as having the maturity to understand the nature of their medical condition, and the nature of a decision to seek assistance to end their life, they would be able to be considered for voluntary assisted dying.</p>
<h2>ACT could be the first</h2>
<p>There appears to be some support within the ACT for this proposal. In a <a href="https://yoursayconversations.act.gov.au/voluntary-assisted-dying-in-ACT">survey</a> of almost 3,000 ACT residents conducted in February this year, some 32% of respondents supported a minimum age of 18 for people to be able to access voluntary assisted dying – suggesting the majority don’t see it as required. </p>
<p>However, it has already elicited <a href="https://www.heraldsun.com.au/news/national/horrified-act-government-may-offer-euthanasia-for-teens/video/d18fc11b451b16a8518e74e83c2f2dff">impassioned commentary</a>, <a href="https://www.skynews.com.au/australia-news/politics/senator-james-paterson-argues-euthanasia-is-never-completely-safe-as-act-considers-access-to-terminally-ill-teens/news-story/2afc4e0cec0d240b069debe7519c3df6">debate</a> and <a href="https://www.theaustralian.com.au/nation/low-barr-archbishops-concerns-vad-will-lead-act-standard-to-the-gutter/news-story/6e460bfb70796cc915501412cdb717d5">expressions of concern</a>.</p>
<p>If passed, the ACT would become the first Australian jurisdiction to allow access to voluntary assisted dying by people under 18. </p>
<p>Internationally, only three countries – the <a href="https://www.cambridge.org/core/books/international-perspectives-on-endoflife-law-reform/extension-of-the-belgian-euthanasia-law-to-minors-in-2014/C32C0050B67BF4EE16020BA320B0B415">Netherlands, Belgium and Colombia</a> – permit minors to access voluntary assisted dying or euthanasia. Canada is currently considering a <a href="https://www.parl.ca/DocumentViewer/en/44-1/AMAD/report-2/page-135#33">proposal</a> to expand its assisted dying law to “mature minors” deemed to have decision-making capacity. </p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-is-legal-in-victoria-but-you-may-not-be-able-to-access-it-208282">Voluntary assisted dying is legal in Victoria, but you may not be able to access it</a>
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<h2>Suffering doesn’t discriminate by age</h2>
<p>During <a href="https://yoursayconversations.act.gov.au/voluntary-assisted-dying-in-ACT/listening-report-now-available">community consultation</a>, many ACT residents felt an age requirement would be arbitrary. </p>
<p>Young people, just like adults, may also be suffering intolerably from an incurable terminal illness. Age limits are only an approximation of a person’s capacity to make one’s own decisions in important matters of life and death. </p>
<p>However, the absence of age limits can also lead to significant variations in access, depending on the views of the medical practitioners involved in making the decision as to a young person’s capacity. </p>
<p>In Belgium, where <a href="https://edition.cnn.com/2016/09/17/health/belgium-minor-euthanasia/index.html">no minimum age</a> is stipulated (provided children understand the decision they are making), children as young as 9 and 11 have been granted access to euthanasia.</p>
<p>In the <a href="https://www.government.nl/topics/euthanasia/euthanasia-assisted-suicide-and-non-resuscitation-on-request">Netherlands</a>, children must be aged 12 or over to request euthanasia. In <a href="https://wfrtds.org/worldmap/colombia/">Colombia</a>, in most cases a child must be aged 12 or over, although in extraordinary cases children aged between 6 and 12 may demonstrate “exceptional neurocognitive and psychological development” and an advanced concept of death appropriate for a 12-year-old child. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/535234/original/file-20230703-117502-cex7d1.jpg?ixlib=rb-1.1.0&rect=45%2C18%2C5961%2C3989&q=45&auto=format&w=1000&fit=clip"><img alt="child with bald head in blurred in background of medical setting with toys on shelf" src="https://images.theconversation.com/files/535234/original/file-20230703-117502-cex7d1.jpg?ixlib=rb-1.1.0&rect=45%2C18%2C5961%2C3989&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/535234/original/file-20230703-117502-cex7d1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/535234/original/file-20230703-117502-cex7d1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/535234/original/file-20230703-117502-cex7d1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/535234/original/file-20230703-117502-cex7d1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/535234/original/file-20230703-117502-cex7d1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/535234/original/file-20230703-117502-cex7d1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">The ACT would be the first Australian place to approve voluntary assisted dying for minors.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/oncological-child-sitting-hospital-chemotherapy-1082978291">Shutterstock</a></span>
</figcaption>
</figure>
<h2>Checks and balances required</h2>
<p>The ACT government noted allowing young people to access voluntary assisted dying requires <a href="https://hdp-au-prod-app-act-yoursay-files.s3.ap-southeast-2.amazonaws.com/5016/8791/2515/FINAL_Listening_Report_VAD_for_publication_on_YourSay_-_27.06.23.pdf">extra safeguards</a> to balance the autonomous rights of young people against their right to special protection and the rights of families. </p>
<p>Parental consent is required in addition to the child’s consent for all children in Belgium (except emancipated minors), and for children aged under 16 in the Netherlands and under 14 in Colombia.</p>
<p>For children aged 16 to 17 in the Netherlands, and 14 to 17 in Colombia, parents are informed and consulted about the young person’s decision. But ultimately the decision is that of the child. </p>
<p>If the ACT proceeds down this path, legislation will need to address difficult questions, including whose wishes prevail if a young person and their parents are in conflict. </p>
<p>Some jurisdictions, including Belgium and Columbia, require extra consultations above those required for adults, to confirm a young person’s capacity to make the decision to end their life. </p>
<p>Other supports may include access to child and family counselling throughout the voluntary assisted dying request and assessment process, or independent review of the child’s eligibility assessment.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-will-soon-be-legal-in-all-states-heres-whats-just-happened-in-nsw-and-what-it-means-for-you-183355">Voluntary assisted dying will soon be legal in all states. Here's what's just happened in NSW and what it means for you</a>
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</p>
<hr>
<h2>How many young people could choose voluntary assisted dying?</h2>
<p>There is not likely to be a great need for young people to access voluntary assisted dying in the ACT. </p>
<p>In Belgium, only four children are reported to have accessed euthanasia in <a href="https://www.cambridge.org/core/books/international-perspectives-on-endoflife-law-reform/extension-of-the-belgian-euthanasia-law-to-minors-in-2014/C32C0050B67BF4EE16020BA320B0B415">nine years</a>. In the Netherlands, 17 cases have been reported over a <a href="https://link.springer.com/article/10.1007/s40656-022-00554-3">20-year period</a>. Although cases of terminally ill young people seeking access to VAD are likely to be <a href="https://www.abc.net.au/news/2021-04-29/rhys-habermann-and-voluntary-euthanasia/100062384">exceptional</a>, they will occasionally arise. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/dutch-government-to-expand-euthanasia-law-to-include-children-aged-one-to-12-an-ethicists-view-203961">Dutch government to expand euthanasia law to include children aged one to 12 – an ethicist's view</a>
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<h2>How else could ACT laws be different?</h2>
<p>Some other departures from the <a href="https://eprints.qut.edu.au/238547/">Australian model</a> proposed by the ACT government are likely to have a far greater impact than the inclusion of minors. </p>
<p>The proposal not to specify a timeframe to death will open the door for people diagnosed with a terminal illness to seek voluntary assisted death several years before their anticipated passing. In other countries, such as Canada, this has been interpreted to allow people to access voluntary assisted dying in the early stages of dementia, before a person loses capacity. </p>
<p>Another proposal with far-reaching ramifications is whether a request for voluntary assisted dying can be made in an <a href="https://www.theaustralian.com.au/nation/politics/teens-as-young-as-14-could-access-voluntary-assisted-dying-in-the-act/news-story/44dfd2f135c71e2f88d4603275ed794b">advance directive</a>. If enacted, this would allow for the euthanasia of a person with advanced dementia, in compliance with their previous request. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1531387864293982209"}"></div></p>
<h2>Under consideration</h2>
<p>At this stage, these proposals simply summarise the views of the ACT community. The next step is for the ACT government to develop its preferred model law to legalise voluntary assisted dying in the territory. </p>
<p>A bill is likely to be introduced in late 2023. It will then be considered by a parliamentary committee, before being debated in the ACT Legislative Assembly some time next year. That gives the ACT government time to consider what safeguards and supports should be included if children or young people are to be permitted to access voluntary assisted dying there.</p><img src="https://counter.theconversation.com/content/208837/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Katrine Del Villar was a member of the team from the Australian Centre for Health Law Research at QUT which was commissioned by the Queensland and Western Australian governments to prepare mandatory training for medical practitioners on the voluntary assisted dying laws in those states. </span></em></p>The decision-making capacity of people under 18 would be assessed on a case-by-case basis by medical practitioners.Katrine Del Villar, Postdoctoral research fellow, Queensland University of TechnologyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2084162023-06-29T15:01:08Z2023-06-29T15:01:08ZResearchers can learn a lot with your genetic information, even when you skip survey questions – yesterday’s mode of informed consent doesn’t quite fit today’s biobank studies<figure><img src="https://images.theconversation.com/files/534693/original/file-20230628-29-j4a0gl.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C1999%2C1499&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Participants in biobank studies are often asked for broad consent to use their data.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/genetic-research-royalty-free-image/136810911">Science Photo Library - TEK IMAGE/Brand X Pictures via Getty Images</a></span></figcaption></figure><p>Imagine you agreed to be part of a new and exciting long-term research study to better understand human health and behavior. For the past few years, you’ve been visiting a collection site where you fill out some questionnaires about your health and daily activities. Research assistants take your height, weight and some other physical characteristics about you. Because you agreed to contribute your genetic data to the study, you also provided a saliva sample during your first visit.</p>
<p>Later, you see a news article reporting that researchers analyzing data from the study you’re participating in have <a href="https://www.vox.com/science-and-health/2018/8/23/17527708/genetics-genome-sequencing-gwas-polygenic-risk-score">found genetic variants</a> that predict the likelihood of someone completing college. You remember reading a long form when you consented to giving your data, but you can’t quite remember all the details. You know the study was about health, but how do these findings about genes and education have anything to do with health? Did they analyze your data specifically? What did they find? </p>
<h2>What are biobanks?</h2>
<p>Many scientific research studies collect data meant to answer a specific research question. For example, to study the genetics of diabetes, researchers might collect data on your blood pressure and lipid levels in addition to genetic data. But increasingly, scientists are collecting large amounts of data to be <a href="https://doi.org/10.1186/s12967-019-1922-3">kept in biobanks</a> – repositories that store genetic data and other biospecimens like blood, urine or tumor tissue to be used in a wide number of future studies.</p>
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<figcaption><span class="caption">Biobank data is often used to conduct genome-wide association studies, or GWAS.</span></figcaption>
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<p>Some biobanks, like the <a href="https://www.ukbiobank.ac.uk">UK Biobank</a>, link biospecimen data to other collected data, such as sexual behavior, medical history, weight, diet and lifestyle. Private companies <a href="https://theconversation.com/how-a-south-african-communitys-request-for-its-genetic-data-raises-questions-about-ethical-and-equitable-research-166940">like 23andMe</a> also obtain consent from their customers to have their data used in research efforts.</p>
<p><a href="https://scholar.google.com/citations?user=zCedU50AAAAJ&hl=en&oi=ao">As a researcher</a> interested in the intersection between <a href="https://www.robbeewedow.com">social behaviors and genetics</a>, I frequently have conversations with people who weren’t aware of how their genetic data is being used. They’re often surprised that the genetic data they consented to be used for research at a private company by using a DNA testing kit or at a biobank while visiting their local clinic might be used to study the genetics of <a href="https://doi.org/10.1126/science.aat7693">same-sex sexual behavior</a> or <a href="https://doi.org/10.1038/s41588-018-0309-3">risk-taking</a>. </p>
<p>In our newly published research, my colleagues and I found that even <a href="https://www.nature.com/articles/s41562-023-01632-7">choosing not to respond to survey questions</a> can reveal information about the population (we found that not responding to survey questions is correlated with a person’s education, health and income levels) if genetic data is available.</p>
<h2>Genetic data and informed consent</h2>
<p>The research that can be done with biobank data might sound scary, but it shouldn’t be. Genetic data, like the data used in our study, is de-identified. This means that it cannot be linked back to individual research participants, who remain anonymous. Further, genetic data for these sorts of genetic studies is used <a href="https://doi.org/10.1038/s43586-021-00056-9">at the aggregate level</a>, meaning it isn’t used to predict or evaluate any one particular individual’s responses or behaviors.</p>
<p>Researchers aren’t using genetic data to target individuals with certain genetic profiles. Almost all genetic research is used to better understand how health behaviors and other factors affect health and to figure out ways to improve outcomes. This goal is why most research participants agree to contribute their data to research in the first place: to help the world through science.</p>
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<figcaption><span class="caption">Many developments in human subject protections arose in response to unethical research.</span></figcaption>
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<p>The problem is whether research participants really understand how their data can be used. Many of the original ideas around the development of the <a href="https://doi.org/10.1186/s12910-019-0414-6">informed consent process and Institutional Review Boards</a>, or IRBs, intended to protect research participants from direct harm or privacy violations were based on the expectation that research studies would be addressing particular questions about a single subject, like cardiovascular disease or lung cancer. This focus was so as not to repeat unethical research atrocities like the infamous <a href="https://www.cdc.gov/tuskegee/timeline.htm">Tuskegee Syphilis Study</a>, where researchers did not tell participants, who were all Black men, that they had syphilis and withheld treatment that was already widely available and known to be highly effective.</p>
<p>But since genetic data is de-identified, it is <a href="https://www.hhs.gov/ohrp/node/4350/index.html">often considered exempt from full IRB review</a>, which is a protocol to ensure studies meet ethical standards and institutional policies. And the broad number of research questions that can be explored with biobanks, along with the amount and types of data collected, has made these original protections to ensure truly informed consent insufficient.</p>
<h2>Improving informed consent</h2>
<p>To be clear, biobanks are enormously important for public health research. They allow researchers to <a href="https://theconversation.com/people-dont-mate-randomly-but-the-flawed-assumption-that-they-do-is-an-essential-part-of-many-studies-linking-genes-to-diseases-and-traits-194793">link many different outcomes and variables</a> together to paint a critical overall picture of human health and behavior. And in contrast with the <a href="https://theconversation.com/most-americans-dont-realize-what-companies-can-predict-from-their-data-110760">personally identifiable online or phone data</a> that companies collect to show you targeted ads, biobanks collect de-identified data that is evaluated in aggregate.</p>
<p>In the age of vast data collection, ensuring that participants are aware of how their data can and cannot be used is necessary to ensure that biobanks are a transparent tool for global good. Biobanks can’t predict how a participant’s data will be used in the future, so it can be difficult for researchers and ethicists to bring back the “informed” part of “informed consent.” Even so, more needs to be done to earn the trust of the valuable research participants who contribute the data to improve science and the world.</p><img src="https://counter.theconversation.com/content/208416/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Robbee Wedow is a research fellow at AnalytiXIN, which is a consortium of health-data organizations, industry partners and university partners in Indiana primarily funded through the Lilly Endowment, IU Health and Eli Lilly and Company.</span></em></p>Biobanks collect and store large amounts of data that researchers use to conduct a wide range of studies. Making sure participants understand what they’re getting into can help build trust in science.Robbee Wedow, Assistant Professor of Sociology and Data Science, Purdue UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2064812023-06-16T12:39:10Z2023-06-16T12:39:10ZAbortion restrictions put hospital ethics committees in the spotlight – but what do they do?<figure><img src="https://images.theconversation.com/files/531517/original/file-20230613-24-qshws0.jpg?ixlib=rb-1.1.0&rect=5%2C0%2C1991%2C1497&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Ethics decisions are among the hardest hospital staff need to make.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/mature-male-doctor-leading-medical-team-meeting-royalty-free-image/529400761?phrase=hospital&adppopup=true">Thomas Barwick/Stone via Getty Images</a></span></figcaption></figure><p>Many states have imposed <a href="https://crsreports.congress.gov/product/pdf/LSB/LSB10779">sweeping restrictions</a> that all but ban abortion since the June 2022 Supreme Court ruling that <a href="https://www.oyez.org/cases/2021/19-1392">overturned the 50-year-old constitutional right to the procedure</a>. These laws have created new obstacles for pregnant patients facing life-threatening complications like <a href="https://www.washingtonpost.com/health/interactive/2023/florida-abortion-law-deborah-dorbert/">severe fetal anomalies</a>, <a href="https://doi.org/10.1001/jamaoncol.2022.3785">cancer diagnoses</a> and <a href="https://www.propublica.org/article/tennessee-abortion-ban-doctors-ectopic-pregnancy">ectopic pregnancies</a> – when a fertilized egg <a href="https://theconversation.com/what-is-ectopic-pregnancy-a-reproductive-health-expert-explains-183800">implants outside the uterus</a>.</p>
<p>Some media reports about these challenging cases mention the involvement of <a href="https://slate.com/news-and-politics/2022/07/abortion-ban-hospital-ethics-committee-mother-life-death.html">hospital ethics committees</a>. </p>
<p>Stat, for example, a medical news website, reported that one OB-GYN had to <a href="https://www.statnews.com/2022/07/05/a-scary-time-fear-of-prosecution-forces-doctors-to-choose-between-protecting-themselves-or-their-patients/">wait for an ethics committee</a> to determine whether she could terminate her patient’s ectopic pregnancy under the narrow, vague exceptions to <a href="https://missouriindependent.com/2022/06/24/abortion-is-now-illegal-in-missouri-in-wake-of-u-s-supreme-court-ruling/">Missouri’s abortion ban</a>. In Texas, a patient told reporters that a hospital refused to abort her life-threatening pregnancy until a doctor on an <a href="https://www.npr.org/sections/health-shots/2022/07/26/1111280165/because-of-texas-abortion-law-her-wanted-pregnancy-became-a-medical-nightmare">ethics committee advocated</a> on her behalf. And a patient in Oklahoma told NPR that an <a href="https://www.npr.org/sections/health-shots/2023/05/01/1172973274/oklahoma-abortion-ban-exception-life-of-mother-molar-pregnancy">ethics committee declined to meet</a> with her husband after doctors refused to terminate her dangerous pregnancy. </p>
<p>Abortion debates have put the ethics of medical decision-making in the spotlight, but ethics committees’ roles are often misunderstood. As <a href="https://gufaculty360.georgetown.edu/s/contact/00336000014TwNiAAK/jacob-earl">trained bioethicists</a> <a href="https://med.uc.edu/landing-pages/profile/Index/Pubs/lanphieh">who have practiced</a> and <a href="https://doi.org/10.1080/15265161.2021.1887963">researched clinical ethics consulation</a>, we aim to clarify how ethics services work in U.S. hospitals.</p>
<h2>Basics of hospital ethics</h2>
<p>Ethics have been part of medical practice <a href="https://www.ama-assn.org/sites/ama-assn.org/files/corp/media-browser/public/ethics/ama-code-ethics-history.pdf">throughout history</a>, with principles like those in the Hippocratic oath guiding decision-making since the 5th century B.C.E.</p>
<p>Specialized <a href="https://journalofethics.ama-assn.org/article/hospital-ethics-committees-consultants-and-courts/2016-05">hospital ethics committees</a> originally formed in the 1960s to address decisions about the use of revolutionary therapies like <a href="https://my.clevelandclinic.org/health/treatments/15368-mechanical-ventilation">mechanical ventilators</a>, which could keep patients alive even if they would never regain consciousness or leave the hospital.</p>
<p>Today, accredited U.S. hospitals are required to <a href="https://doi.org/10.1016/j.jcjq.2022.09.004">provide ethics services</a>, and most <a href="https://code-medical-ethics.ama-assn.org/ethics-opinions/ethics-committees-health-care-institutions">use ethics committees</a> to help meet this requirement. Their functions include developing ethics-related policies and providing ethics education to staff. For example, ethics committees have contributed to hospital policies about what to do if a child’s parent <a href="https://doi.org/10.1080/15265161.2012.719263">opposes blood transfusions</a> for religious reasons and triage policies for <a href="https://doi.org/10.1086/JCE2020314303">allocating scarce resources</a> during the COVID-19 pandemic. </p>
<p>Another key service is clinical ethics consultation: advising staff, patients or families about how to navigate ethical issues related to a specific patient’s clinical care. Usually these requests are handled by <a href="https://doi.org/10.1080/15265161.2021.1893547">a subcommittee or an individual ethics consultant</a> – and, increasingly, hospitals are hiring staff with <a href="https://doi.org/10.1186/1472-6939-5-6">specialized training</a> in <a href="https://doi.org/10.1159/000509119">medical ethics</a>.</p>
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<a href="https://images.theconversation.com/files/532301/original/file-20230615-18996-t5rpn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Two women sit on a bench inside a waiting room talking with a third woman in a wheelchair." src="https://images.theconversation.com/files/532301/original/file-20230615-18996-t5rpn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/532301/original/file-20230615-18996-t5rpn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/532301/original/file-20230615-18996-t5rpn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/532301/original/file-20230615-18996-t5rpn.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/532301/original/file-20230615-18996-t5rpn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/532301/original/file-20230615-18996-t5rpn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/532301/original/file-20230615-18996-t5rpn.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Patients’ families can request a consultation with ethicists to help think through challenging decisions.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/caucasian-son-visiting-father-in-hospital-royalty-free-image/508484885?phrase=hospital+patient+family&adppopup=true">Luis Alvarez/DigitalVision via Getty Images</a></span>
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<p>Apart from ethicists, <a href="https://doi.org/10.1086/JCE2016274322">committee members</a> may also include physicians, nurses, social workers, chaplains, lawyers and administrators. Sometimes they include volunteers who represent the views and experiences of local communities. Member selection, funding and other organizational features vary by hospital. </p>
<h2>Recommendations, not rulings</h2>
<p><a href="https://doi.org/10.1086/JCE2018294291">Ethics consultations</a> about specific patients often address concerns about patients <a href="http://dx.doi.org/10.1136/jme.27.suppl_1.i24">who cannot make their own medical decisions</a>, such as if they are in a coma and it is unclear who should make decisions on their behalf. Requests for consultation also can occur when a medical team and a patient disagree about the goals of care: for example, whether applying a do-not-resuscitate order is in the best interests of a severely ill patient.</p>
<p>One essential aspect of <a href="https://code-medical-ethics.ama-assn.org/ethics-opinions/ethics-committees-health-care-institutions">ethics committees’ and consultants’ work</a> is that their input is advisory, not binding. They help identify the <a href="https://doi.org/10.1080/15265161.2012.750388">range of ethically acceptable options</a>, based on medical information from health care providers and on patients’ goals and values.</p>
<p>But even when ethics consultations result in a clear recommendation, neither patients nor health care providers are obligated to follow consultants’ advice. In other words, ethics consultants are not decision-makers, but they do contribute to a decision-making process. </p>
<h2>When medicine says yes, but the law says no</h2>
<p>Some media reports, however, have suggested that hospital ethics committees are <a href="https://slate.com/news-and-politics/2022/07/abortion-ban-hospital-ethics-committee-mother-life-death.html">acting as final arbiters</a>, determining <a href="https://www.statnews.com/2022/08/15/deciding-abortion-medically-necessary-isnt-ethics-question/">whether doctors can help end life-threatening pregnancies</a> in states with severe abortion restrictions.</p>
<p>Yet none of these states currently has laws suggesting that ethics committees must play a role in those decisions. The question of whether an abortion is medically necessary or legally acceptable is one that doctors or lawyers would make, not ethicists.</p>
<p>Other recent reporting on hospital ethicists’ experiences <a href="https://www.texasobserver.org/abortion-laws-pregnancy-loss-healthcare/">suggests a different reality</a>. New state laws threaten doctors with fines or imprisonment for providing abortions that are considered <a href="https://policysearch.ama-assn.org/policyfinder/detail/abortion?uri=%2FAMADoc%2Fdirectives.xml-D-5.999.xml">standard medical care</a> for patients facing serious risks to their health. Some of these doctors are seeking guidance from ethics experts about how to meet their ethical and professional obligations under these difficult circumstances.</p>
<p>Ethics consultants in states with restrictive abortion laws can help health care providers work through difficult questions. For example, how can providers communicate honestly and respectfully with patients about their health needs when they might risk prosecution for recommending abortion? How should providers navigate ambiguities in the law in order to protect their patients’ health and well-being? When might the severe health risks to a patient morally justify providing an abortion, even if there are unresolved concerns about legal liability?</p>
<p>Even if the law <a href="http://dx.doi.org/10.1136/medethics-2014-102311">prevents doctors from providing treatment their patients need</a>, talking with an ethics consultant can <a href="https://doi.org/10.1111/bioe.12064">help ease their moral distress</a> about being unable to do what’s best for their patient.</p>
<p>In fact, one study showed that only one-third of clinical ethics consultations wound up <a href="https://doi.org/10.1080/23294515.2015.1127295">changing a patient’s treatment plan</a>. However, consultations left three-quarters of clinicians feeling more confident about enacting a plan of care. Input from ethicists can help doctors confirm that their plan of care is appropriate or help them <a href="https://doi.org/10.1080/23294515.2015.1127295">clarify their own values</a>.</p>
<h2>Getting help</h2>
<p>Most hospitals allow anyone directly involved in a patient’s care to request <a href="https://doi.org/10.1080/15265161.2021.1893547">clinical ethics consultation services</a>, including patients and their families. </p>
<p><a href="https://doi.org/10.1080/15265161.2021.1893547">Yet available data</a> suggests that very few patients and families do. For example, <a href="https://doi.org//10.1086/JCE201122207">a review</a> of a hospital with a high volume of ethics consultation requests showed that only 4% came from patients or their families. However, the majority of patients and families who interact with ethics services say <a href="https://doi.org/10.1016/S0002-9343(96)80067-2">the process helped</a> them understand their situation, figure out difficult decisions or feel morally supported.</p>
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<a href="https://images.theconversation.com/files/531521/original/file-20230613-15-awxc1v.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A woman in blue scrubs and a white doctor's coat chats with a man and boy in a room with views out over a city." src="https://images.theconversation.com/files/531521/original/file-20230613-15-awxc1v.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/531521/original/file-20230613-15-awxc1v.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/531521/original/file-20230613-15-awxc1v.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/531521/original/file-20230613-15-awxc1v.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/531521/original/file-20230613-15-awxc1v.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/531521/original/file-20230613-15-awxc1v.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/531521/original/file-20230613-15-awxc1v.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Ethics consultations can help patients and caregivers clarify their own values.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/female-doctor-talking-to-patient-in-hospital-royalty-free-image/1293517598?phrase=hospital&adppopup=true">The Good Brigade/DigitalVision via Getty Images</a></span>
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<p>Access to high-quality health care <a href="https://www.kff.org/racial-equity-and-health-policy/issue-brief/disparities-in-health-and-health-care-5-key-question-and-answers/">is deeply unequal</a> in the United States, and the same is true for ethics consultations. <a href="https://doi.org/10.1080/15265161.2021.1893547">Nearly all</a> teaching hospitals, religiously affiliated hospitals and hospitals with over 200 patient beds have ethics consultation services. But roughly 1 in 5 small hospitals, rural hospitals and nonteaching hospitals do not. </p>
<p>Many hospitals have other services, such as “<a href="https://www.aha.org/guidesreports/2012-10-25-call-action-safeguarding-integrity-healthcare-quality-and-safety-systems">ethics hotlines</a>” where people can report <a href="https://www.aha.org/advocacy/compliance">legal and compliance issues</a>, but these are not the same as ethics committees or ethics consultants. Patients seeking support in making care decisions should ask for the hospital’s clinical ethics consultation service to connect with the right resource. </p>
<p>Ethicists do not make decisions for others, but they can support clinicians and patients through dilemmas and distress.</p><img src="https://counter.theconversation.com/content/206481/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Hospital ethics committees and consultants do not make decisions for others, but their input can help support doctors and patients navigate difficult dilemmas.Elizabeth Lanphier, Assistant Professor of Philosophy and Bioethicist, University of Cincinnati Jake Earl, Adjunct Lecturer of Philosophy, Georgetown UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2079112023-06-16T05:11:13Z2023-06-16T05:11:13ZScientists have created synthetic human embryos. Now we must consider the ethical and moral quandaries<figure><img src="https://images.theconversation.com/files/532335/original/file-20230616-27-q1yird.jpg?ixlib=rb-1.1.0&rect=1%2C0%2C997%2C562&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-illustration/embryonic-stem-cell-human-microscope-background-2187993411">Shutterstock</a></span></figcaption></figure><p>Researchers have created synthetic human embryos using stem cells, according to <a href="https://www.bbc.com/news/health-65914934">media</a> <a href="https://www.theguardian.com/science/2023/jun/14/synthetic-human-embryos-created-in-groundbreaking-advance">reports</a>. Remarkably, these embryos have reportedly been created from embryonic stem cells, meaning they do not require sperm and ova.</p>
<p>This development, widely described as a breakthrough that could help scientists learn more about human development and genetic disorders, was revealed this week in Boston at the <a href="https://www.isscr.org/upcoming-programs/isscr-2023">annual meeting</a> of the International Society for Stem Cell Research.</p>
<p>The research, announced by Professor Magdalena Żernicka-Goetz of the University of Cambridge and the California Institute of Technology, has not yet been published in a peer-reviewed journal. But Żernicka-Goetz told the meeting these human-like embryos had been made by reprogramming human embryonic stem cells. </p>
<p>So what does all this mean for science, and what ethical issues does it present?</p>
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<a href="https://theconversation.com/worlds-first-synthetic-embryo-why-this-research-is-more-important-than-you-think-188217">World's first 'synthetic embryo': why this research is more important than you think</a>
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<h2>What did the researchers do?</h2>
<p>Each of these synthetic human embryos is created from a single stem cell. Żernicka-Goetz described how her team grew the synthetic embryos to a stage of development called “gastriculation”, which is a stage just beyond the 14-day developmental mark for a human embryo. </p>
<p>The current legal limit to how long a human embryo can be permitted to develop in a lab is 14 days.</p>
<p>This is approximately the length of time from fertilisation of the egg to implantation in the uterine wall, if conception has taken place within a human womb.</p>
<p>So, synthetic embryos have – for the first time – been allowed to develop past this point. </p>
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<p>Initially, the 14-day rule was both a moral and a practical limit; scientists didn’t have the technology to keep embryos alive longer than this. </p>
<p>But the International Society for Stem Cell Research’s 2016 <a href="https://www.sciencealert.com/stem-cell-research-community-drops-14-day-limit-on-human-embryo-research">guidelines</a> also suggested the 14-day limit was morally appropriate, as past this point the cells within the embryo begin to differentiate to form important body systems like the gut, brain and lungs. </p>
<p>The International Society for Stem Cell Research’s updated 2021 <a href="https://www.isscr.org/guidelines/#guidelineskeytopics">guidelines</a> now say we should reconsider the 14-day rule, via public debate, to perhaps allow research on embryos later into development in some cases. </p>
<p>From what has been <a href="https://www.theguardian.com/science/2023/jun/14/synthetic-human-embryos-created-in-groundbreaking-advance">reported</a> about Żernicka-Goetz and her team’s research, the creation of synthetic human-like embryos is a significant advance. </p>
<p>It’s further remarkable they seem to behave, in terms of development, like a human embryo would in some ways. </p>
<p>Żernicka-Goetz reported the human-like embryos began to develop placenta and yolk sacs, but not a beating heart or the beginning of a brain. </p>
<p>Despite the role of the placenta in pregnancy, and its importance to the health of mother and fetus, we know surprisingly little about this vital but temporary <a href="https://www.nichd.nih.gov/research/supported/human-placenta-project/default">organ</a>.</p>
<p>If it was possible to observe placenta in a lab via these synthetic embryos, this could yield valuable knowledge. </p>
<h2>Moral quandaries</h2>
<p>However, just as there are real possibilities for gaining knowledge from synthetic human-like embryos, there are also real moral quandaries.</p>
<p>One of these quandaries arises around whether their creation really gets us away from the use of human embryos. </p>
<p>Robin Lovell-Badge, the head of stem cell biology and developmental genetics at the Francis Crick Institute in London UK, reportedly <a href="https://www.theguardian.com/science/2023/jun/14/synthetic-human-embryos-created-in-groundbreaking-advance">said</a> that if these human-like embryos can really model human development in the early stages of pregnancy, then we will not have to use human embryos for research.</p>
<p>At the moment, it is unclear if this is the case for two reasons.</p>
<p>First, the embryos were created from human embryonic stem cells, so it seems they do still need human embryos for their creation. Perhaps more light will be shed on this when Żernicka-Goetz’s research is published. </p>
<p>Second, there are questions about the extent to which these human-like embryos really can model human development. </p>
<p>At the moment, animal models of similar synthetic embryos suggest they are not capable of developing into a full living being. <a href="https://www.cell.com/cell/fulltext/S0092-8674(22)00981-3?utm_source=STAT+Newsletters&utm_campaign=492bf84a1c-MR_COPY_01&utm_medium=email&utm_term=0_8cab1d7961-492bf84a1c-149563237">Studies</a> in mice and monkeys have so far shown that the synthetic embryos die a short while after being implanted into a female’s womb, which means they are not viable. </p>
<p>There could be significant limits to the usefulness of these synthetic embryos for learning about human developmental issues, if human-like synthetic embryos aren’t capable of developing into full human babies and do not form important body structures like a beating heart and a brain.</p>
<p>One of the reasons researchers want to use these embryos is for research into miscarriage and developmental anomalies. This is very important, but will these synthetic embryos be “close enough” to real human embryos to reveal useful answers?</p>
<p>Scientists may still rely on the use of human embryos if we do need human embryos for the creation of these models, or there are research questions that these synthetic embryos can’t address.</p>
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<h2>Is it morally permissable?</h2>
<p>This leaves us with the important moral question about whether it is permissible to use human embryos for research.</p>
<p>Further, if the human-like synthetic embryos are capable of developing into full living beings, then we must consider whether it is morally permissible to create them just for research. </p>
<p>It could be that they are not currently capable of developing much further than the 14-day mark. </p>
<p>Scientists might decide that this is a problem that needs to be fixed, partly for practical reasons about the limits to their usefulness. Scientists might then fix these synthetic embryos so that they could continue to develop. However, this would create a huge moral quandary. </p>
<p>We should think carefully about whether it is ethical to create living human-like beings only to conduct research on them.</p>
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Read more:
<a href="https://theconversation.com/researchers-have-grown-human-embryos-from-skin-cells-what-does-that-mean-and-is-it-ethical-157228">Researchers have grown 'human embryos' from skin cells. What does that mean, and is it ethical?</a>
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<p class="fine-print"><em><span>Kathryn MacKay does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>We should think carefully about whether it is ethical to create living human-like beings only to conduct research on them.Kathryn MacKay, Senior Lecturer in Bioethics, University of SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2076052023-06-14T20:11:16Z2023-06-14T20:11:16Z‘We are gambling with the future of our planet for the sake of hamburgers’: Peter Singer on climate change<figure><img src="https://images.theconversation.com/files/531654/original/file-20230613-21-p10mcb.jpg?ixlib=rb-1.1.0&rect=122%2C40%2C5333%2C3590&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/beef-cattle-being-loaded-onto-road-2028765296">John Carnemolla, Shutterstock</a></span></figcaption></figure><p>I wasn’t aware of climate change until the 1980s — hardly anyone was — and even when we recognised the dire threat that burning fossil fuels posed, it took time for the role of animal production in warming the planet to be understood. </p>
<p>Today, though, the fact that eating plants will reduce your greenhouse gas emissions is one of the most important and influential reasons for cutting down on animal products and, for those willing to go all the way, becoming vegan.</p>
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Read more:
<a href="https://theconversation.com/peter-singers-fresh-take-on-animal-liberation-a-book-that-changed-the-world-but-not-enough-205830">Peter Singer's fresh take on Animal Liberation – a book that changed the world, but not enough</a>
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<p>A few years ago, eating locally — eating only food produced within a defined radius of your home — became the thing for environmentally conscious people to do, to such an extent that “locavore” became the Oxford English Dictionary’s <a href="https://blog.oup.com/2007/11/locavore/">“word of the year” for 2007</a>. </p>
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<p>If you enjoy getting to know and support your local farmers, of course, eating locally makes sense. But if your aim is, as many local eaters said, to reduce greenhouse gas emissions, you would do much better by thinking about what you are eating, rather than where it comes from. That’s because <a href="https://ourworldindata.org/food-choice-vs-eating-local">transport makes up only a tiny share</a> of the greenhouse gas emissions from the production and distribution of food. </p>
<p>With beef, for example, transport is only 0.5% of total emissions. So if you eat local beef you will still be responsible for 99.5% of the greenhouse gas emissions your food would have caused if you had eaten beef transported a long distance. On the other hand, if you choose peas you will be responsible for only about 2% of the greenhouse gas emissions from producing a similar quantity of local beef. </p>
<p>And although beef is the worst food for emitting greenhouse gases, a broader study of the carbon footprints of food across the European Union showed that meat, dairy and eggs accounted for 83% of emissions, and transport for only 6%. </p>
<p>More generally, plant foods typically have far lower greenhouse gas emissions than any animal foods, whether we are comparing equivalent quantities of calories or of protein. Beef, for example, emits 192 times as much carbon dioxide equivalent per gram of protein as nuts, and while these are at the extremes of the protein foods, eggs, the animal food with the lowest emissions per gram of protein, still has, per gram of protein, more than twice the emissions of tofu. </p>
<p>Animal foods do even more poorly when compared with plant foods <a href="https://ourworldindata.org/environmental-impacts-of-food#carbon-footprint-of-food-products">in terms of calories produced</a>. Beef emits 520 times as much per calorie as nuts, and eggs, again the best-performing animal product, emit five times as much per calorie as potatoes. </p>
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<p>Favourable as these figures are to plant foods, they leave out something that tilts the balance even more strongly against animal foods in the effort to avoid catastrophic climate change: the “carbon opportunity cost” of the vast area of land used for grazing animals and the smaller, but still very large, area used to grow crops that are then fed — wastefully, as we have seen — to confined animals. </p>
<p>Because we use this land for animals we eat, it cannot be used to restore native ecosystems, including forests, which would safely remove huge amounts of carbon from the atmosphere. One study has found that a shift to plant-based eating would free up so much land for this purpose that seizing the opportunity would give us a 66% probability of achieving something that most observers believe we have missed our chance of achieving: limiting warming to 1.5°C. </p>
<p>Another study has suggested that a rapid phaseout of animal agriculture would enable us to stabilise greenhouse gases for the next 30 years and offset more than two-thirds of all carbon dioxide emissions this century. According to the authors of this study:</p>
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<p>The magnitude and rapidity of these potential effects should place the reduction or elimination of animal agriculture at the forefront of strategies for averting disastrous climate change.</p>
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Read more:
<a href="https://theconversation.com/it-can-be-done-it-must-be-done-ipcc-delivers-definitive-report-on-climate-change-and-where-to-now-201763">'It can be done. It must be done': IPCC delivers definitive report on climate change, and where to now</a>
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<p>Climate change is undoubtedly the biggest environmental issue facing us today, but it is not the only one. If we look at environmental issues more broadly, we find further reasons for preferring a plant-based diet.</p>
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<a href="https://images.theconversation.com/files/531656/original/file-20230613-27-ptt5ua.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Smoky landscape photo, fire consumed land recently deforested by cattle farmers near Novo Progresso, Para state, Brazil." src="https://images.theconversation.com/files/531656/original/file-20230613-27-ptt5ua.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/531656/original/file-20230613-27-ptt5ua.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/531656/original/file-20230613-27-ptt5ua.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/531656/original/file-20230613-27-ptt5ua.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/531656/original/file-20230613-27-ptt5ua.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/531656/original/file-20230613-27-ptt5ua.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/531656/original/file-20230613-27-ptt5ua.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Fires in the Amazon and linked to cattle ranching.</span>
<span class="attribution"><a class="source" href="https://photos.aap.com.au/search/amazon%20cattle">Andre Penner/AP Photo</a></span>
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<p>The clearing and burning of the Amazon rainforest means not only the release of carbon from the trees and other vegetation into the atmosphere, but also the likely extinction of many plant and animal species that are still unrecorded. </p>
<p>This destruction is driven largely by the prodigious appetite of the affluent nations for meat, which makes it more profitable to clear the forest than to preserve it for the indigenous people living there, establish an ecotourism industry, protect the area’s biodiversity, or keep the carbon locked up in the forest. We are, quite literally, gambling with the future of our planet for the sake of hamburgers. </p>
<p>Joseph Poore, of the University of Oxford, led a study that consolidated a huge amount of environmental data on <a href="https://www.science.org/doi/10.1126/science.aaq0216">38,700 farms and 1,600 food processors</a> in 119 countries and covered 40 different food products. Poore summarised the upshot of all this research thus: </p>
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<p>A vegan diet is probably the single biggest way to reduce your impact on planet Earth, not just greenhouse gases, but global acidification, eutrophication, land use and water use. It is far bigger than cutting down on your flights or buying an electric car, as these only cut greenhouse gas emissions. </p>
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<p>Poore doesn’t see “sustainable” animal agriculture as the solution:</p>
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<p>Really it is animal products that are responsible for so much of this. Avoiding consumption of animal products delivers far better environmental benefits than trying to purchase sustainable meat and dairy. </p>
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<p>Those who claim to care about the wellbeing of human beings and the preservation of our climate and our environment should become vegans for those reasons alone. </p>
<p>Doing so would reduce greenhouse gas emissions and other forms of pollution, save water and energy, free vast tracts of land for reforestation, and eliminate the most significant incentive for clearing the Amazon and other forests. </p>
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<p><em>This is an edited extract from <a href="https://www.penguin.co.uk/books/456655/animal-liberation-now-by-singer-peter/9781847927767">Animal Liberation Now</a> by Peter Singer (Penguin Random House).</em></p><img src="https://counter.theconversation.com/content/207605/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Peter Singer does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>When Peter Singer first published Animal Liberation in 1975, he wasn’t aware of climate change. But the new book, Animal Liberation Now, argues eating plants will reduce greenhouse gas emissions.Peter Singer, Professor of Bioethics in the Center for Human Values, Princeton UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2036482023-04-12T17:37:45Z2023-04-12T17:37:45ZCreating and implanting synthetic monkey embryos could pave the way to stem-cell babies<figure><img src="https://images.theconversation.com/files/520569/original/file-20230412-28-ajhtdp.jpg?ixlib=rb-1.1.0&rect=0%2C10%2C7000%2C4977&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Scientists created monkey embryo-like structures and implanted them, although no fetuses formed.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/creating-and-implanting-synthetic-monkey-embryos-could-pave-the-way-to-stem-cell-babies" width="100%" height="400"></iframe>
<p>In January 2017, I met Jiankui He, the now-infamous Chinese scientist who would go on to <a href="https://doi.org/10.1093/jlb/lsz010">create the world’s first genome-edited babies</a>. This was at a meeting in Berkeley, Calif., hosted by Jennifer Doudna who, along with Emmanuelle Charpentier, was awarded the 2020 Nobel Prize in Chemistry for her work on CRISPR genome-editing technology.</p>
<p>At this meeting, geneticist George Church, known for his work to revive the woolly mammoth, described research on “synthetic human embryos” derived from stem cells. Church dubbed these embryo-like structures “<a href="https://doi.org/10.7554/eLife.20674">synthetic human entities with embryo-like features</a>.” </p>
<p>At the time, Church called for <a href="https://doi.org/10.7554/elife.20674">careful sustained dialogue about the moral merits of the 14-day limit on human embryo research</a>.</p>
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<figcaption><span class="caption">George Church’s lecture titled ‘Future, Human, Nature,’ delivered at the Innovative Genomics Institute in January 2017.</span></figcaption>
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<h2>Monkey embryo-like structures</h2>
<p>This month, a team of Chinese scientists created “<a href="https://doi.org/10.1016/j.stem.2023.03.009">synthetic monkey embryos</a>” or, more precisely, synthetic monkey embryo-like structures from stem cells and used these for reproduction. </p>
<p>The reported research involved an <em>in vitro</em> study — meaning it was conducted in the lab — as well as an <em>in vivo</em> study, conducted in the body.</p>
<p>The <em>in vitro</em> study involved the ongoing culture of the monkey embryo-like structures in the lab to see how they might develop after the time at which implantation would typically occur. </p>
<p>Under the microscope, these embryo-like structures initially looked like “natural” early-stage embryos — embryos created using eggs, sperm and fertilization. They became disorganized over time, however, and only five of 484 early-stage synthetic embryos survived to Day 17.</p>
<p>The <em>in vivo</em> study involved the transfer of seven-day-old monkey embryo-like structures to eight female monkeys in the hope of initiating a pregnancy. Implantation occurred in three of the monkeys, but the pregnancies were short-lived. The synthetic monkey embryos stopped developing within 20 days post-transfer and no fetuses formed.</p>
<h2>Initiating pregnancy</h2>
<p>The creation of non-human embryo-like structures is not new. In 2022, two research teams — <a href="https://doi.org/10.1016/j.cell.2022.07.028">one in Israel</a> and <a href="https://doi.org/10.1038/s41586-022-05246-3">another in the United Kingdom</a> — reported on the creation of mouse embryo-like structures from mouse stem cells.</p>
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<span class="caption">A microscopic image of a synthetic mouse embryo with colours added to show brain and heart formation.</span>
<span class="attribution"><span class="source">(Gianluca Amadei, Charlotte Handford via AP)</span></span>
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<p>The attempt to initiate a pregnancy in female monkeys using monkey embryo-like structures is new, however, and suggests that it might one day be possible to attempt the same in humans. Presumably the goal would be to allow scientists to study early human development, including neurodevelopment, and to study pregnancy loss.</p>
<p>This most recent research raises a critical ethical question: Are synthetic human-like embryo structures sufficiently different from human embryos created by fertilization to be exempt from the current limits on human embryo research? </p>
<p>The question is timely as researchers have already <a href="https://doi.org/10.1038/s41586-021-04267-8">used human stem cells</a> to <a href="https://doi.org/10.1038/s41421-021-00316-8">create a human blastocyst model</a>.</p>
<p>Some researchers may argue that “synthetic” and “natural” human embryos are not the same, and that synthetic human embryos should not be subject to the rules governing natural human embryos. Others will disagree. </p>
<p>Presumably the truth of the matter will turn on whether the synthetic embryos can produce a live baby, but the only way to know this is to do the experiment.</p>
<h2>Research guidelines</h2>
<p>Clearly this research, and earlier studies, challenge the current international consensus on the 14-day rule that dictates human embryos cannot be maintained in the laboratory beyond 14 days post-fertilization. The 14-day rule is <a href="https://laws-lois.justice.gc.ca/eng/acts/a-13.4/fulltext.html">the law in Canada</a>, and is a widely accepted research guideline in many countries around the world. It prohibits the development of human embryos outside the human body beyond 14 days.</p>
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Read more:
<a href="https://theconversation.com/stem-cell-research-community-drops-14-day-limit-on-human-embryo-research-161616">Stem cell research community drops 14-day limit on human embryo research</a>
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<p>This limit was introduced in the early 1980s. Up to 14 days, it was possible for one human embryo to split and become twins or for two human embryos to recombine and become a single individual. </p>
<p>On the basis of these biological facts, some reasoned that prior to 14 days, human embryos were not discrete individuals and so they were not protectable human life. They could be used for research in a lab and then discarded. </p>
<p>Others who also supported a 14-day limit on human embryo research focused on a different developmental milestone, <a href="https://doi.org/10.1002/bies.200900038">the primitive streak</a>, which usually appears on Day 15 and signals the development of the nervous system and the brain. </p>
<p>Prior to 14 days, the human embryo could not experience pain and did not have the capacity for human reasoning. On this basis, a similar conclusion was reached: human embryos could be the legitimate subject of research until 14 days.</p>
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<h2>Arbitrary limit?</h2>
<p>For some time now, scientists have argued that <a href="http://dx.doi.org/10.1136/medethics-2020-106406">the 14-day limit is arbitrary and should be changed</a>. Now that it’s possible to maintain natural embryos in culture beyond 14 days, and may be possible to do so as well for synthetic embryos, some members of the scientific community insist that the 14-day limit should be revised or eliminated.</p>
<p>This notion became entrenched in the <a href="https://www.isscr.org/guidelines">2021 research guidelines of the International Society for Stem Cell Research</a>. The 2016 research guidelines prohibited human embryo research beyond 14 days; however, <a href="https://www.technologyreview.com/2021/03/16/1020879/scientists-14-day-limit-stem-cell-human-embryo-research/">the updated guidelines dropped this prohibition</a> and did not propose an alternative — <a href="https://doi.org/10.1038/d41586-021-01697-2">something that colleagues and I have been critical of</a>.</p>
<p>All of this has me wondering if in the not-too-distant future, I (and others) will be commenting on the ethics of the world’s first stem-cell babies. If so, will the commentary be similar to the response to the first genome-edited babies, which was uniformly critical? Or, by that time, will some celebrate this as a creative way to make designer babies?</p><img src="https://counter.theconversation.com/content/203648/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Françoise Baylis is a member of the Governing Board of the International Science Council</span></em></p>In April, scientists implanted synthetic monkey embryos in female monkeys. While none of them developed into fetuses, this is a new development that raises important ethical questions.Françoise Baylis, Distinguished Research Professor, Emerita, Dalhousie UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1995862023-03-01T13:26:15Z2023-03-01T13:26:15ZShould we bring back the dodo? De-extinction is a feel-good story, but these high-tech replacements aren’t really ‘resurrecting’ species<figure><img src="https://images.theconversation.com/files/510983/original/file-20230219-4190-8bwxxw.jpg?ixlib=rb-1.1.0&rect=9%2C3%2C2051%2C1446&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">An impossible sight – but maybe not for long.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/what-if-an-extinct-dodo-crossed-your-path-geology-royalty-free-image/1098376082?phrase=dodo&adppopup=true">Beeldbewerking/iStock via Getty Images Plus</a></span></figcaption></figure><p>It’s no secret that human activities have put many of this planet’s <a href="https://www.un.org/sustainabledevelopment/blog/2019/05/nature-decline-unprecedented-report/#:%7E:text=The%20Report%20finds%20that%20around,20%25%2C%20mostly%20since%201900.">inhabitants in danger</a>. Extinctions are happening <a href="https://doi.org/10.1073/pnas.1922686117">at a dramatically faster rate</a> than they have over the past tens of millions of years. An estimated quarter of all species on Earth are at risk of being lost, many within decades.</p>
<p>What can scientists possibly do to stop that trend? For some, the answer is to “de-extinct.”</p>
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<iframe id="noa-web-audio-player" style="border: none" src="https://embed-player.newsoveraudio.com/v4?key=x84olp&id=https://theconversation.com/should-we-bring-back-the-dodo-de-extinction-is-a-feel-good[…]-tech-replacements-arent-really-resurrecting-species-199586&bgColor=F5F5F5&color=D8352A&playColor=D8352A" width="100%" height="110px"></iframe>
<p><em>You can listen to more articles from The Conversation, narrated by Noa, <a href="https://theconversation.com/us/topics/audio-narrated-99682">here</a>.</em></p>
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<p>Colossal, <a href="https://colossal.com/de-extinction/">a biotechnology company</a> that garnered headlines for its plan to “de-extinct” the woolly mammoth, is now attempting to “bring back” the famously <a href="https://colossal.com/dodo/">dead dodo bird</a>. The company says its goal is to create a population of undead dodos to put on the Indian Ocean island of Mauritius, where the hefty, flightless creatures lived before humans <a href="https://www.nationalgeographic.com/science/article/the-dodo-is-dead-long-live-the-dodo">drove them to extinction</a> in the late 1600s.</p>
<p>As environmental humanists, we study the morality of different conservation interventions, and are interested in how de-extinction might change the ways people think about their responsibilities toward nature. <a href="https://www.benaminteer.com/">One of us</a>, Ben, is a professor of <a href="https://scholar.google.com/citations?user=eUlYYcYAAAAJ&hl=en&oi=ao">environmental ethics</a> who explores the ethics of de-extinction in his 2018 book “<a href="http://cup.columbia.edu/book/the-fall-of-the-wild/9780231177788">The Fall of the Wild</a>.” The other, Risa, is <a href="https://search.asu.edu/profile/3287715">a doctoral student</a> researching how de-extinction might change public perceptions about extinction, especially its emotional impact.</p>
<h2>What de-extinction is and isn’t</h2>
<p>De-extinction is not exactly what it sounds like. Rather than “bringing back” lost species, it’s more of a process to create <a href="https://www.quantamagazine.org/why-de-extinction-is-impossible-but-could-work-anyway-20220509/">their high-tech look-alikes</a>. </p>
<p>Scientists would edit the genomes of the dodo’s closest living relative – the <a href="https://mymodernmet.com/nicobar-pigeon/">Nicobar pigeon</a>, which contains the pigeon’s full set of DNA – and add some of the most important dodo genes, taken from preserved dodo remains. Then they could put that genome into an egg cell, and let that egg develop into an organism that should look like a dodo.</p>
<p>But that organism wouldn’t be genetically identical to the dodo. Nor would it have any other dodos to teach it how to act like and, well, actually be a dodo.</p>
<figure class="align-center ">
<img alt="A colorful bird with a blue body and iridescent greenish feathers sits among trees." src="https://images.theconversation.com/files/510984/original/file-20230219-402-wykwuh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/510984/original/file-20230219-402-wykwuh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/510984/original/file-20230219-402-wykwuh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/510984/original/file-20230219-402-wykwuh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/510984/original/file-20230219-402-wykwuh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/510984/original/file-20230219-402-wykwuh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/510984/original/file-20230219-402-wykwuh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A Nicobar pigeon, the dodo’s closest – and much more colorful – relative.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/nicobar-pigeon-on-the-log-royalty-free-image/1127389181?phrase=nicobar%20pigeon&adppopup=true">Tambako the Jaguar/Moment via Getty Images</a></span>
</figcaption>
</figure>
<p>Colossal hasn’t successfully created any de-extinct creatures yet. Nor have any other scientists, unless you count the team that cloned <a href="https://www.theatlantic.com/technology/archive/2013/03/the-10-minutes-when-scientists-brought-a-species-back-from-extinction/274118/">the Pyrenean ibex</a> in 2003 – but that clone died within minutes. And yet Colossal seems confident, saying it hopes to de-extinct <a href="https://www.technologyreview.com/2022/11/21/1063548/how-much-would-you-pay-see-woolly-mammoth/">Tasmanian tigers by 2025</a> and <a href="https://www.ladbible.com/entertainment/scientists-confirm-year-woolly-mammoths-could-be-brought-back-20220113">woolly mammoths by 2027</a>. They’re certainly amassing a fortune to make it happen: Since its founding in 2021, Colossal has raised over <a href="https://www.bloomberg.com/news/articles/2023-01-31/dodo-bird-dna-has-startup-valued-at-1-billion-to-bring-back-extinct-species?leadSource=uverify%20wall">US$225 million</a> from tech investors, <a href="https://www.benzinga.com/news/22/08/28529105/paris-hilton-winklewoss-twins-backed-startup-aims-to-back-these-extinct-animals">Paris Hilton</a> and even <a href="https://theintercept.com/2022/09/28/cia-extinction-woolly-mammoth-dna/">a CIA-backed</a> venture capital firm. </p>
<h2>Possibilities, or pitfalls?</h2>
<p>Supporters have argued that de-extinction will eventually help restore ecosystems. “Bringing back” passenger pigeons could help <a href="https://reviverestore.org/about-the-passenger-pigeon/">restore forests</a> in the northeastern United States, for example, while woolly mammoth proxies could help <a href="https://www.nationalgeographic.com/adventure/article/130311-deextinction-reviving-extinct-species-opinion-animals-science">restore the Siberian steppe</a> and <a href="https://www.newyorker.com/science/elements/the-wooly-mammoth-lumbers-back-into-view">keep permafrost frozen</a>. Some de-extinction advocates have also <a href="https://colossal.com/a-better-world/">positioned</a> their projects as potential long-term solutions to combating mass biodiversity loss in general. </p>
<p>But many ecologists <a href="https://doi.org/10.1126/science.1236965">and ethicists</a> have highlighted the uncertainty around introducing these novel creatures into the wild. Even if the de-extinct dodos did act more or less like their extinct counterparts, it’s hard to know how a habitat that hasn’t had any dodolike birds in it for 350 years would be affected by this new species. Opponents have pushed back even more strongly against claims that de-extinction could be a widespread solution, <a href="https://e360.yale.edu/features/the_case_against_de-extinction_its_a_fascinating_but_dumb_idea">pointing out</a> how bringing back one species at a time would not be enough to curb the Earth’s losses.</p>
<p><a href="https://slate.com/technology/2013/03/de-extinction-isnt-a-good-idea.html">Other issues</a> include how to decide where all these de-extinct creatures would live, as well as <a href="https://doi.org/10.1007/s10806-018-9755-2">animal welfare concerns</a>: for potential surrogate animals that would be impregnated, and the de-extinct creatures themselves, which never asked to be “brought back.”</p>
<h2>More than science</h2>
<p>To us, one of the more interesting questions about de-extinction has to do with how it changes the way people think about extinction. </p>
<p>Some de-extinction boosters <a href="https://e360.yale.edu/features/the_case_for_de-extinction_why_we_should_bring_back_the_woolly_mammoth">have argued</a> that de-extinction could create a more hopeful story about humans’ ability to combat mass extinction. Many others share the desire for more inspiring conservation stories, too. <a href="https://doi.org/10.1016/j.tree.2010.11.009">Some conservationists</a> and <a href="https://doi.org/10.1080/13504622.2011.637157">psychologists</a> have argued that environmentalists need more positivity to get people engaged with environmental issues. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/510985/original/file-20230219-4255-m0lups.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A handful of people in bright yellow vests fetch garbage out of a waterway." src="https://images.theconversation.com/files/510985/original/file-20230219-4255-m0lups.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/510985/original/file-20230219-4255-m0lups.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/510985/original/file-20230219-4255-m0lups.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/510985/original/file-20230219-4255-m0lups.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/510985/original/file-20230219-4255-m0lups.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/510985/original/file-20230219-4255-m0lups.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/510985/original/file-20230219-4255-m0lups.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">What’s the best way to motivate care for the Earth: Hope or fear?</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/young-female-and-male-environmentalist-cleaning-royalty-free-image/1357465084?phrase=conservation%20animal&adppopup=true">Maskot via Getty Images</a></span>
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</figure>
<p>Others, however, say de-extinction isn’t hopeful, <a href="https://www.cnet.com/science/biology/thylacine-de-extinction-why-we-need-to-talk-about-resurrecting-species/">but misleading</a>. <a href="https://doi.org/10.1002/hast.752">Many worry</a> that de-extinction actually risks making humans less inclined to care about ongoing extinctions. After all, why care about preventing extinction <a href="https://humansandnature.org/communicating-conservation-goals-if-extinction-is-no-longer-forever/">if we can eventually reverse it</a>? </p>
<p>It’s hard to rally the troops with a message of unrelenting guilt and despair. But reckoning with those difficult emotions can be useful for reflecting on humanity’s responsibilities – especially considering that extinction is our fault to begin with, and since de-extinction isn’t really “resurrecting” anything. </p>
<p>In fact, <a href="https://doi.org/10.3390/rel11060293">some scholars</a> argue that what humans really need is to learn to grieve extinct species. Grief, <a href="https://doi.org/10.7882/AZ.2014.048">they say</a>, is a transformational process that helps people recognize the value of what’s been lost and appreciate what’s left. Grief will never be enough without action. But we believe learning how to grieve together can be a more responsible and honest way to cope with extinction than pretending it can simply be undone.</p>
<p>So which is better at motivating care for the environment: positive or negative stories? There are still no sure answers, and testing their impact on audiences today is a key part of Risa’s research. Perhaps it can help conservationists at large learn how to tell more motivational stories – but it will take some time to get there.</p>
<p>In the meantime, we suggest that de-extinction scientists and advocates call de-extinction what it really is: not resurrecting extinct species, but creating their replacements.</p><img src="https://counter.theconversation.com/content/199586/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Two conservation scholars break down what de-extinction looks like – and the debate over whether it could do any good.Risa Aria Schnebly, Ph.D. Student in Biology and Society, Arizona State UniversityBen A. Minteer, Professor of Environmental Ethics and Conservation, Arizona State UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2002832023-02-22T12:09:35Z2023-02-22T12:09:35ZChatGPT has many uses. Experts explore what this means for healthcare and medical research<figure><img src="https://images.theconversation.com/files/511632/original/file-20230222-738-84e4k9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">AI can be like having a high-level personal assistant. </span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>The sanctity of the doctor-patient relationship is the cornerstone of the healthcare profession. This protected space is steeped in tradition – the Hippocratic oath, medical ethics, professional codes of conduct and legislation. But all of these are poised for disruption by digitisation, emerging technologies and “artificial” intelligence (AI). </p>
<p>Innovation, robotics, digital technology and improved diagnostics, prevention and therapeutics can change healthcare for the better. They also raise ethical, legal and social challenges.</p>
<p>Since the floodgates were opened on ChatGPT (Generative Pertaining Transformer) in 2022, bioethicists like us have been contemplating the role this new “chatbot” could play in healthcare and health research.</p>
<p><a href="https://becominghuman.ai/chatbots-in-healthcare-part-2-126c5b5d36cb">Chat GPT</a> is a language model that has been trained on massive volumes of internet texts. It attempts to imitate human text and can perform various roles in healthcare and health research. </p>
<p>Early adopters have started using ChatGPT to assist with mundane tasks like writing sick certificates, patient letters and letters asking medical insurers to pay for specific expensive medications for patients. In other words, it is like having a high-level personal assistant to speed up bureaucratic tasks and increase time for patient interaction. </p>
<p>But it could also assist in more serious medical activities such as triage (choosing which patients can get access to kidney dialysis or intensive care beds), which is critical in settings where resources are limited. And it could be used to enrol participants in clinical trials.</p>
<p>Incorporating this sophisticated chatbot in patient care and medical research raises a number of ethical concerns. Using it could lead to unintended and unwelcome consequences. These concerns relate to confidentiality, consent, quality of care, reliability and inequity.</p>
<p>It is too early to know all the ethical implications of the adoption of ChatGPT in healthcare and research. The more this technology is used, the clearer the implications will get. But questions regarding potential risks and governance of ChatGPT in medicine will inevitably be part of future conversations, and we focus on these briefly below. </p>
<h2>Potential ethical risks</h2>
<p>First of all, use of ChatGPT runs the risk of committing privacy breaches. Successful and efficient AI depends on machine learning. This requires that data are constantly fed back into the neural networks of chatbots. If identifiable patient information is fed into ChatGPT, it forms part of the information that the chatbot uses in future. In other words, sensitive information is “out there” and vulnerable to disclosure to third parties. The extent to which such information can be protected is not clear. </p>
<p>Confidentiality of patient information forms the basis of trust in the doctor-patient relationship. ChatGPT threatens this privacy – a risk that vulnerable patients may not fully understand. Consent to AI assisted healthcare could be suboptimal. Patients might not understand what they are consenting to. Some may not even be asked for consent. Therefore medical practitioners and institutions may expose themselves to litigation.</p>
<p>Another bioethics concern relates to the provision of high quality healthcare. This is traditionally based on robust scientific evidence. Using ChatGPT to generate evidence has the potential to accelerate research and scientific publications. However, ChatGPT in its current format is static – there is an end date to its database. It does not provide the latest references in real time. At this stage, “human” researchers are doing a more accurate job of generating evidence. More worrying are reports that it fabricates references, compromising the integrity of the evidence-based approach to good healthcare. Inaccurate information could compromise the safety of <a href="https://www.nature.com/articles/d41586-023-00056-7">healthcare</a>. </p>
<p>Good quality evidence is the foundation of medical treatment and medical advice. In the era of democratised healthcare, providers and patients use various platforms to access information that guides their decision-making. But ChatGPT may not be adequately resourced or configured at this point in its development to provide <a href="https://www.nature.com/articles/d41586-023-00288-7">accurate and unbiased information</a>. </p>
<p>Technology that uses biased information based on under-represented data from people of colour, women and children is harmful. Inaccurate readings from some brands of <a href="https://pubmed.ncbi.nlm.nih.gov/28764215/">pulse oximeters</a> used to measure oxygen levels during the recent COVID-19 pandemic <a href="https://annalsofintensivecare.springeropen.com/articles/10.1186/s13613-021-00974-7">taught us this</a>.</p>
<p>It is also worth thinking about what ChatGPT might mean for low- and middle-income countries. The issue of access is the most obvious. The benefits and risks of emerging technologies tend to be unevenly distributed between countries.</p>
<p>Currently, access to ChatGPT is free, but this <a href="https://www.theatlantic.com/technology/archive/2022/12/chatgpt-ai-chatbots-openai-cost-regulations/672539/">will not last</a>. Monetised access to advanced versions of this language chatbot is a potential threat to resource-poor environments. It could entrench the digital divide and global health inequalities.</p>
<h2>Governance of AI</h2>
<p>Unequal access, potential for exploitation and possible harm-by-data underlines the importance of having specific regulations to govern the health uses of ChatGPT in low- and middle-income countries. </p>
<p>Global guidelines are emerging to ensure governance in AI. But many low- and middle-income countries are yet to adapt and contextualise these frameworks. Furthermore, many countries lack laws that apply specifically to AI. </p>
<p>The global south needs locally relevant conversations about the ethical and legal implications of adopting this new technology to ensure that its benefits are enjoyed and fairly distributed.</p><img src="https://counter.theconversation.com/content/200283/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Keymanthri Moodley receives research funding from the National Institutes of Health, USA.
She has previously received funding for research from the Welcome Trust, EDCTP, IDRC, SAMRC, NRF and WHO.
Research reported in this publication was supported by the National Institute of Mental Health of the National Institutes of Health under Award Number U01MH127704. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
</span></em></p><p class="fine-print"><em><span>Stuart Rennie receives funding from the National Institutes of Health, USA. He is a member of the HIV Prevention Trials Network (HPTN) Ethics Working Group. </span></em></p>Early adopters have started using ChatGPT to assist with mundane tasks like writing sick certificates and patient letters.Keymanthri Moodley, Distinguished Professor in the Department of Medicine and Director, The Centre for Medical Ethics & Law, Stellenbosch UniversityStuart Rennie, Associate professor, University of North Carolina at Chapel HillLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1975752023-01-17T13:34:02Z2023-01-17T13:34:02Z50 years after Roe, many ethics questions shape the abortion debate: 4 essential reads<figure><img src="https://images.theconversation.com/files/504340/original/file-20230112-14-sf3ro2.jpg?ixlib=rb-1.1.0&rect=13%2C9%2C1008%2C669&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Anti-abortion protesters demonstrate in front of the Supreme Court in 1985, the 12th anniversary of the Roe v. Wade decision.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/washington-d-c-anti-abortionists-demonstrate-in-front-of-news-photo/515955026?phrase=1973%20abortion&adppopup=true">Bettmann/Bettmann via Getty Images</a></span></figcaption></figure><p>Jan. 22, 2023, marks the 50th anniversary of Roe v. Wade, the landmark Supreme Court decision that recognized a constitutional right to abortion. That stood for nearly half a century, until a majority of justices <a href="https://www.npr.org/2022/06/24/1102305878/supreme-court-abortion-roe-v-wade-decision-overturn">reversed it</a> in June 2022’s Dobbs v. Jackson Women’s Health decision. </p>
<p>People <a href="https://theconversation.com/there-is-no-one-religious-view-on-abortion-a-scholar-of-religion-gender-and-sexuality-explains-184532">with a broad range of views on abortion</a> often say their faith tradition helps inform their opinions. But beyond religion, many other ethical and moral questions shape Americans’ perspectives on the topic. </p>
<p>Here are some of The Conversation’s most thought-provoking articles on the underlying philosophical and bioethical issues involved in abortion debates.</p>
<h2>1. Rethinking ‘personhood’</h2>
<p>Activism for and against abortion rights often gets summed up into two simple-sounding terms: “pro-life” and “pro-choice.”</p>
<p>But “‘life’ and ‘choice’ are not, in and of themselves, really the issue,” <a href="https://theconversation.com/what-does-it-mean-to-be-a-person-different-cultures-have-different-answers-186015">wrote Robert Launay</a> of Northwestern University. “The central question is what – or who – constitutes a person.”</p>
<p>As <a href="https://anthropology.northwestern.edu/people/faculty/launay.html">an anthropologist</a>, Launay studies that question in terms of culture. Different religions and societies think about personhood in different ways, he explained. Ideas about personhood in the U.S., for example, often stem from Christian ideas about the soul and are black and white – something is or isn’t considered a person. </p>
<p>In some of the Indigenous African traditions where he has done research, meanwhile, “many view personhood as a process rather than a once-and-for-all phenomenon” – something humans gradually acquire over time, through relationships, or through rituals.</p>
<figure class="align-center ">
<img alt="A baby sucking its thumb lies on its back on a patterned blanket." src="https://images.theconversation.com/files/504387/original/file-20230113-26-h05j76.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/504387/original/file-20230113-26-h05j76.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=402&fit=crop&dpr=1 600w, https://images.theconversation.com/files/504387/original/file-20230113-26-h05j76.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=402&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/504387/original/file-20230113-26-h05j76.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=402&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/504387/original/file-20230113-26-h05j76.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=505&fit=crop&dpr=1 754w, https://images.theconversation.com/files/504387/original/file-20230113-26-h05j76.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=505&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/504387/original/file-20230113-26-h05j76.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=505&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A 4-month-old baby girl is tended by her grandmother inside a church in Duekoue, Ivory Coast, in 2011.</span>
<span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/IvoryCoast/db6beed455e1419cb9bf3e92533c8370/photo?Query=baby%20cote%20d%27ivoire&mediaType=photo&sortBy=arrivaldatetime:desc&dateRange=Anytime&totalCount=5&currentItemNo=0">AP Photo/Rebecca Blackwell</a></span>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-does-it-mean-to-be-a-person-different-cultures-have-different-answers-186015">What does it mean to be a 'person'? Different cultures have different answers</a>
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<h2>2. Moral status</h2>
<p>Even within a single society, defining “personhood” can be complex and controversial. </p>
<p>Personhood is a key concern in bioethics, <a href="https://theconversation.com/what-is-personhood-the-ethics-question-that-needs-a-closer-look-in-abortion-debates-182745">wrote</a> University of Washington philosopher <a href="https://phil.washington.edu/people/nancy-s-jecker">Nancy Jecker</a>. In that context, being a “person” isn’t necessarily the same as being “human” – and it’s not an easy concept to nail down.</p>
<p>“When philosophers talk about ‘personhood,’ they are referring to something or someone having exceptionally high moral status, often described as having a right to life, an inherent dignity, or mattering for one’s own sake,” she explained. Personhood implies that someone or something can make strong moral claims, such as a claim against being interfered with. In abortion debates, Jecker added, “no one disputes the fetus’s species, but many disagree about the fetus’s personhood.” </p>
<p>Americans hold three main views of when personhood begins – at conception, at birth, or sometime in between – which is a central part of the country’s inability to agree about abortion rules. But the implications of how societies define personhood go much further, Jecker said, influencing areas like care for the environment and end-of-life treatment.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-is-personhood-the-ethics-question-that-needs-a-closer-look-in-abortion-debates-182745">What is 'personhood'? The ethics question that needs a closer look in abortion debates</a>
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<h2>3. Breaking down bioethics</h2>
<p>Given Americans’ diverse views about religion and personhood, are there other concepts that can help forge consensus?</p>
<p>In another article, Jecker <a href="https://theconversation.com/abortion-and-bioethics-principles-to-guide-u-s-abortion-debates-184916">broke down four key bioethics terms</a>, four bedrock principles in the field: autonomy; nonmaleficence, or “do no harm”; beneficence, or providing beneficial care; and justice. </p>
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<img alt="A woman in a white shirt sits in bed beside a doctor wearing a stethoscope who holds her hand." src="https://images.theconversation.com/files/504390/original/file-20230113-18-q1l7ub.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/504390/original/file-20230113-18-q1l7ub.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/504390/original/file-20230113-18-q1l7ub.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/504390/original/file-20230113-18-q1l7ub.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/504390/original/file-20230113-18-q1l7ub.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/504390/original/file-20230113-18-q1l7ub.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/504390/original/file-20230113-18-q1l7ub.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=502&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Four basic principles guide the field of medical ethics.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/close-up-of-a-female-nurse-holding-hands-for-royalty-free-image/1315654897?adppopup=true">goc/E+ via Getty Images</a></span>
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<p>People disagree about how to interpret those principles: Someone in favor of abortion rights, for example, might be most concerned about harm to pregnant women, while someone who opposes them could be more concerned about harm to a fetus.</p>
<p>Understanding how people see those principles in play, though, is at least a constructive step. Jecker suggested that, short of reaching a moral consensus, “articulating our own moral views and understanding others’ can bring all sides closer to a principled compromise.”</p>
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<strong>
Read more:
<a href="https://theconversation.com/abortion-and-bioethics-principles-to-guide-u-s-abortion-debates-184916">Abortion and bioethics: Principles to guide U.S. abortion debates</a>
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<h2>4. Beyond ‘my body, my choice’</h2>
<p>For decades, one other phrase has dominated the U.S. abortion debate: the slogan “my body, my choice.”</p>
<p>At this point, the catchphrase is practically synonymous with the movement for reproductive rights. It’s profoundly shaped how people think about abortion rights: as an issue of privacy, decisions that women should make for themselves with their doctors.</p>
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<img alt="An activist seen holding a placard that says, 'My body My Choice.'" src="https://images.theconversation.com/files/414171/original/file-20210802-18-7zo3kh.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C4992%2C3330&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/414171/original/file-20210802-18-7zo3kh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/414171/original/file-20210802-18-7zo3kh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/414171/original/file-20210802-18-7zo3kh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/414171/original/file-20210802-18-7zo3kh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/414171/original/file-20210802-18-7zo3kh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/414171/original/file-20210802-18-7zo3kh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">A protester holds aloft a ‘my body, my choice’ placard in a 2021 demonstration in Alabama.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/an-activist-seen-holding-a-placard-that-says-my-body-my-news-photo/1145542984?adppopup=true">Ronen Tivony/SOPA Images/LightRocket via Getty Images</a></span>
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<p>But “my body, my choice” <a href="https://theconversation.com/with-abortion-heading-back-to-the-supreme-court-is-it-time-to-retire-the-my-body-my-choice-slogan-163770">doesn’t fully capture the key ideas</a>, argued <a href="https://med.uc.edu/landing-pages/faculty-profile/Index/Pubs/lanphieh">Elizabeth Lanphier</a>, a moral philosopher and bioethicist at the University of Cincinnati. Reproductive rights aren’t just about a lack of interference, what philosophers call “negative liberty.” Abortion is also about the right to access health care. </p>
<p>“‘My body, my choice’ suggests that because people own their bodies, they get to control them,” she wrote. But self-ownership isn’t so valuable without also having “positive liberty,” the freedom to do something.</p>
<p>“My research suggests ‘my body, my choice’ was a crucial idea at the time of Roe to emphasize ownership over bodily and health care decisions,” Lanphier concluded. “But I believe the debate has since moved on – reproductive justice is about more than owning your body and your choice; it is about a right to health care.”</p>
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Read more:
<a href="https://theconversation.com/with-abortion-heading-back-to-the-supreme-court-is-it-time-to-retire-the-my-body-my-choice-slogan-163770">With abortion heading back to the Supreme Court, is it time to retire the 'my body, my choice' slogan?</a>
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<p><em>Editor’s note: This story is a roundup of articles from The Conversation’s archives.</em></p><img src="https://counter.theconversation.com/content/197575/count.gif" alt="The Conversation" width="1" height="1" />
Looking at the underlying philosophical and moral questions involved in abortion debates can help explain why it’s such an intensely divisive issue.Molly Jackson, Religion and Ethics EditorLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1967142022-12-20T17:52:36Z2022-12-20T17:52:36ZDid He Jiankui ‘Make People Better’? Documentary spurs a new look at the case of the first gene-edited babies<figure><img src="https://images.theconversation.com/files/501995/original/file-20221219-14-6lxobo.jpg?ixlib=rb-1.1.0&rect=218%2C11%2C2914%2C2144&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">He Jiankui seemed unprepared for the furor set off by his bombshell announcement.</span> <span class="attribution"><a class="source" href="https://commons.wikimedia.org/wiki/File:He_Jiankui.jpg">The He Lab/Wikimedia Commons</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span></figcaption></figure><p>In the four years since an experiment by disgraced scientist He Jiankui resulted in the <a href="https://apnews.com/article/ap-top-news-international-news-ca-state-wire-genetic-frontiers-health-4997bb7aa36c45449b488e19ac83e86d">birth of the first babies with edited genes</a>, numerous articles, books and <a href="https://nap.nationalacademies.org/catalog/25665/heritable-human-genome-editing">international</a> <a href="https://www.who.int/groups/expert-advisory-committee-on-developing-global-standards-for-governance-and-oversight-of-human-genome-editing">commissions</a> have reflected on whether and how heritable genome editing – that is, modifying genes that will be passed on to the next generation – should proceed. They’ve reinforced an international consensus that it’s premature to proceed with heritable genome editing. Yet, concern remains that some individuals might buck that consensus and recklessly forge ahead – just as He Jiankui did.</p>
<p>Some observers – <a href="https://scholar.google.com/citations?user=yebS-LIAAAAJ&hl=en&oi=ao">myself included</a> – have <a href="https://theconversation.com/rogue-science-strikes-again-the-case-of-the-first-gene-edited-babies-107684">characterized He as a rogue</a>. However, the new documentary “<a href="https://makepeoplebetterfilm.com/">Make People Better</a>,” directed by filmmaker Cody Sheehy, leans toward a different narrative. In its telling, He was a misguided centerpiece of a broader ecosystem that subtly and implicitly supported rapid advancement in gene editing and reproductive technologies. That same system threw He under the bus – <a href="https://www.technologyreview.com/2019/12/30/131061/he-jiankui-sentenced-to-three-years-in-prison-for-crispr-babies/">and into prison</a> – when it became evident that the global community strongly rejected his experiments.</p>
<h2>Creation of the ‘CRISPR babies’</h2>
<p>“Make People Better” outlines an already well-documented saga, tracing the path of He from a promising young scientist at Rice and Stanford to a driven researcher establishing a laboratory in China that secretly worked to make heritable genome editing a reality.</p>
<p>He’s experiment involved using the <a href="https://theconversation.com/nobel-prize-for-crispr-honors-two-great-scientists-and-leaves-out-many-others-147730">CRISPR-Cas9 technique</a>. Sometimes compared to “molecular scissors,” this precision tool allows scientists to make very specific edits to DNA in living cells. He used CRISPR to alter the CCR5 gene in human embryos with the goal of conferring immunity to HIV. These embryos were brought to term, resulting in the birth of at <a href="https://www.newscientist.com/article/mg25533930-700-whats-next-for-the-gene-edited-children-from-crispr-trial-in-china/">least three children with altered DNA</a>. </p>
<p>The revelation of the births of the first gene-edited babies in November 2018 resulted in an international uproar. A <a href="https://www.theatlantic.com/science/archive/2018/12/15-worrying-things-about-crispr-babies-scandal/577234/">laundry list</a> of ethical failings in He’s experiment <a href="https://www.nature.com/articles/d41586-018-07573-w">quickly became evident</a>. There was insufficient proof that editing embryos with CRISPR was safe enough to be done in humans. Appropriate regulatory approval had <a href="https://www.scmp.com/news/china/science/article/2182964/china-confirms-gene-edited-babies-blames-scientist-he-jiankui">not been obtained</a>. The parents’ consent was <a href="https://link.springer.com/article/10.1007/s11673-019-09953-x">grossly inadequate</a>. And the whole endeavor was <a href="https://apnews.com/article/health-science-china-medical-ethics-ap-top-news-13303d99c4f849829e98350301e334a9">shrouded in secrecy</a>.</p>
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<figcaption><span class="caption">Trailer for the documentary ‘Make People Better.’</span></figcaption>
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<h2>New context, same story</h2>
<p>Three figures play a central role in “Make People Better”‘s study of He Jiankui. There’s Antonio Regalado, the reporter from MIT Technology Review who broke the original story. There’s Ben Hurlbut, an ethicist and confidante of He. And there’s Ryan (the documentary withholds his full identity), a public relations representative who worked with He to make gene editing palatable to the world. He Jiankui himself was not interviewed, though his voice permeates the documentary in previously unreleased recordings by Hurlbut.</p>
<p>Regalado and Hurlbut have <a href="https://www.technologyreview.com/2019/12/03/75084/nature-jama-rejected-he-jiankui-crispr-baby-lulu-nana-paper/">already</a> <a href="https://doi.org/10.1353/pbm.2020.0013">written</a> a <a href="https://www.technologyreview.com/2019/02/21/137309/the-crispr-twins-had-their-brains-altered/">considerable</a> <a href="https://doi.org/10.1038/d41586-018-07881-1">amount</a> on this saga, so the documentary’s most novel contribution comes from Ryan’s discussion of his public relations work with He. Ryan appears to be a true believer in He’s vision to literally “make people better” by using gene editing to prevent dreadful diseases. </p>
<p>But Ryan is aware that public backlash could torpedo this promising work. His reference point is the initial <a href="https://www.pewresearch.org/science/2015/01/29/public-and-scientists-views-on-science-and-society/">public hostility to GMO foods</a>, and Ryan strove to avoid that outcome by gradually easing the public in to the heritable gene editing experiment.</p>
<p>This strategy turned out to be badly mistaken for a variety of reasons. He Jiankui was himself eager to publicize his work. Meanwhile, Regalado’s <a href="https://www.technologyreview.com/2018/11/25/138962/exclusive-chinese-scientists-are-creating-crispr-babies/">tenacious journalism</a> led him to a clinical trials registry where He had quietly posted about the study.</p>
<p>But ultimately, those factors just affected the timing of revelation. Both Ryan and He failed to appreciate that they had very little ability to influence how the experiment would be received, nor how much condemnation would result.</p>
<h2>Blind spots</h2>
<p>While some documentaries strive to be flies on the wall, objectivity is elusive. Tone, framing, editing and choice of interview subjects all coalesce into a narrative with a perspective on the subject matter. A point of view is not itself objectionable, but it opens the documentary to critiques of its implicit stance.</p>
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<p>An uncomfortable tension lies at the center of “Make People Better.” </p>
<p>On the one hand, the documentary gives substantial attention to Hurlbut and Ryan, who emphasize that He did not act alone. He discussed his plans with <a href="https://doi.org/10.1126/science.365.6452.430">dozens of people</a> in China and around the world, whose implicit support was essential to both the experiment and his confidence that he was doing nothing wrong.</p>
<p>On the other hand, the documentary focuses on understanding He’s background, motives and ultimate fate. Other figures who might have influenced He to take a different path fade into the background – sometimes quite literally, appearing for only seconds before the documentary moves on.</p>
<p>Indeed, as a biomedical ethicist, I believe there is good reason to put responsibility for the debacle squarely on He’s shoulders. Before the news broke in 2018, international panels of experts had already issued <a href="https://www.nationalacademies.org/news/2015/12/on-human-gene-editing-international-summit-statement">advisory statements</a> that heritable gene editing was premature. Individuals like Hurlbut personally advised He as much. The secrecy of the experiment itself is a testament: He must have suspected the international community would reject the experiment if they knew what was going on. </p>
<p>If He had gone through proper, transparent channels – <a href="https://www.cos.io/initiatives/prereg">preregistering the trial</a> and consulting publicly with international experts on his plans before he began – the whole saga could have been averted. He chose a different, more dangerous and secretive path from the vast majority of researchers working in reproductive biotechnology, which I suggest must be acknowledged.</p>
<p>The documentary does not reflect critically on its own title. The origin of the phrase “make people better” is surprising and the film’s most clever narrative moment, so I won’t spoil it. But does heritable gene editing really make people better? <a href="https://doi.org/10.1111/bioe.12878">Perhaps instead</a>, it makes better people. </p>
<p>The gene-edited babies were created via in vitro fertilization specifically as a part of He’s experiment. They would not have existed if He had never gotten involved in gene editing. So, some would argue, He did not save any individual from contracting HIV. Rather, he created new people potentially less likely to contract HIV than the general population. </p>
<p><a href="https://doi.org/10.1007/s11019-020-09947-2">I contend</a> that this doesn’t mean gene editing is pointless. From a population health perspective, gene editing could save lives by reducing the incidence of certain diseases. But this perspective does change the moral tenor of gene editing, perhaps reducing its urgency.</p>
<p>What’s more, editing CCR5 is a dubious means to improve human well-being, since there are already effective ways to prevent HIV infection that are far less risky and uncertain than heritable gene editing. <a href="https://doi.org/10.17226/25665">Scientific consensus suggests</a> that the best first-in-human candidates for heritable gene editing are instead devastating genetic disorders that cannot be ameliorated in other ways.</p>
<h2>The future for He Jiankui</h2>
<p>Perhaps due to the timing of its filming, the documentary does not dwell on He being <a href="https://www.science.org/content/article/chinese-scientist-who-produced-genetically-altered-babies-sentenced-3-years-jail">sentenced to three years in Chinese prison</a> as a result of the experiment, nor mention that <a href="https://www.technologyreview.com/2022/04/04/1048829/he-jiankui-prison-free-crispr-babies/">he was released</a> early in 2022.</p>
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<p>Evidently, He is not content to fade quietly into obscurity. He says he is slated in March 2023 to <a href="https://pandaily.com/chinese-gene-editing-scientist-he-jiankui-sets-up-beijing-lab-following-prison-release/">give a talk at the University of Oxford</a> that may shed more light on his motives and actions. In the meantime, he has <a href="https://www.statnews.com/2022/11/29/after-prison-crispr-babies-scientist-is-attempting-comeback/">established a new biotech start-up</a> focused on developing gene therapies. To be clear, this work does not involve editing embryos.</p>
<p>Still, it appears prison has not diminished He’s ambition. <a href="https://www.scmp.com/news/china/science/article/3201896/chinese-scientist-behind-gene-edited-babies-speak-oxford-university">He claims</a> that he could develop a cure for the degenerative genetic disease Duchenne muscular dystrophy – if he receives funding in excess of US$100 million. </p>
<p>To me, this ambition reflects a curious symmetry between Regalado and He in “Make People Better.” Both are driven to be first, to be at the forefront of their respective fields. Sometimes, as with Regalado, this initiative can be good – his intrepid reporting and instinct to publish quickly brought He’s unethical experiment to a rapid close. But in other cases, like He’s, that drive can lead to dangerous science that runs roughshod over ethics and good governance. </p>
<p>Perhaps, then, the best lesson a viewer can take from “Make People Better” is that ambition is a double-edged sword. In the years to come, it will be up to the international community to keep such ambition in check and ensure proper restrictions and oversight on heritable genome editing.</p><img src="https://counter.theconversation.com/content/196714/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>G. Owen Schaefer does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Scientific and public uproar resulted when the Chinese scientist announced the births of the first human babies with heritable edits to their genes. A new documentary reexamines the saga.G. Owen Schaefer, Assistant Professor in Biomedical Ethics, National University of SingaporeLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1940172022-12-02T13:42:14Z2022-12-02T13:42:14ZBrain-computer interfaces could allow soldiers to control weapons with their thoughts and turn off their fear – but the ethics of neurotechnology lags behind the science<figure><img src="https://images.theconversation.com/files/498321/original/file-20221130-26-kthfq4.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C2100%2C1427&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Brain-computer interfaces raise many ethical questions about how and whether they should be used for certain applications.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/illustration/brain-and-chip-royalty-free-illustration/1405017412">Wenjin Chen/DigitalVision Vectors via Getty Images</a></span></figcaption></figure><p>Imagine that a soldier has a <a href="https://www.battelle.org/insights/newsroom/press-release-details/battelle-led-team-wins-darpa-award-to-develop-injectable-bi-directional-brain-computer-interface">tiny computer device injected</a> into their bloodstream that can be guided with a magnet to specific regions of their brain. With training, the soldier could then control weapon systems thousands of miles away using their thoughts alone. Embedding a similar type of computer in a soldier’s brain could <a href="https://doi.org/10.1038/s41591-020-01175-8">suppress their fear and anxiety</a>, allowing them to carry out combat missions more efficiently. Going one step further, a device equipped with an <a href="https://doi.org/10.21037%2Fatm.2019.11.109">artificial intelligence system</a> could directly control a soldier’s behavior by predicting what options they would choose in their current situation.</p>
<p>While these examples may sound like science fiction, the science to develop neurotechnologies like these is already in development. <a href="https://doi.org/10.3389/fnsys.2021.578875">Brain-computer interfaces</a>, or BCI, are technologies that decode and transmit brain signals to an external device to carry out a desired action. Basically, a user would only need to think about what they want to do, and a computer would do it for them.</p>
<p>BCIs are currently being tested in people with <a href="https://doi.org/10.1038/s41586-021-03506-2">severe neuromuscular disorders</a> to help them recover everyday functions like communication and mobility. For example, patients can turn on a light switch by visualizing the action and having a BCI decode their brain signals and transmit it to the switch. Likewise, patients can focus on specific letters, words or phrases on a computer screen that a BCI can move a cursor to select.</p>
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<figcaption><span class="caption">Researchers are looking into ways to directly translate brain signals into synthesized speech.</span></figcaption>
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<p>However, <a href="https://doi.org/10.1038/551159a">ethical considerations</a> have not kept pace with the science. While ethicists have <a href="https://bioethicsarchive.georgetown.edu/pcsbi/sites/default/files/GrayMatter_V2_508.pdf">pressed for more ethical inquiry</a> into neural modification in general, many practical questions around brain-computer interfaces have not been fully considered. For example, do the benefits of BCI outweigh the substantial risks of brain hacking, information theft and behavior control? Should BCI be used to curb or enhance specific emotions? What effect would BCIs have on the moral agency, personal identity and mental health of their users?</p>
<p>These questions are of great interest to us, a <a href="https://scholar.google.com/citations?user=WL2cyzEAAAAJ&hl=en">philosopher</a> and <a href="https://scholar.google.com/citations?user=78GnqoAAAAAJ&hl=en">neurosurgeon</a> who study the ethics and science of current and future BCI applications. Considering the ethics of using this technology before it is implemented could prevent its potential harm. We argue that responsible use of BCI requires safeguarding people’s ability to function in a range of ways that are considered <a href="https://doi.org/10.1007/s13347-022-00597-1">central to being human</a>.</p>
<h2>Expanding BCI beyond the clinic</h2>
<p>Researchers are exploring <a href="https://doi.org/10.1093/acprof:oso/9780195388855.003.0023">nonmedical brain-computer interface applications</a> in many fields, including gaming, virtual reality, artistic performance, warfare and air traffic control. </p>
<p>For example, <a href="https://neuralink.com/">Neuralink</a>, a company co-founded by Elon Musk, is <a href="https://doi.org/10.2196/16194">developing a brain implant</a> for healthy people to potentially <a href="https://theconversation.com/neuralink-wants-to-wire-your-brain-to-the-internet-what-could-possibly-go-wrong-76180">communicate wirelessly</a> with anyone with a similar implant and computer setup.</p>
<p>In 2018, the U.S. military’s <a href="https://www.darpa.mil/news-events/2018-03-16">Defense Advanced Research Projects Agency</a> launched a program to develop “a safe, portable neural interface system capable of reading from and writing to multiple points in the brain at once.” Its aim is to produce nonsurgical BCI for able-bodied service members for national security applications by 2050. For example, a soldier in a special forces unit could use BCI to send and receive thoughts with a fellow soldier and unit commander, a form of <a href="https://apps.dtic.mil/sti/pdfs/AD1083010.pdf">direct three-way communication</a> that would enable real-time updates and more rapid response to threats.</p>
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<figcaption><span class="caption">Brain-computer interfaces can allow people to perform certain tasks by merely thinking about them.</span></figcaption>
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<p>To our knowledge, these projects have not opened a public discussion about the ethics of these technologies. While the U.S. military <a href="https://apps.dtic.mil/sti/pdfs/AD1083010.pdf">acknowledges</a> that “negative public and social perceptions will need to be overcome” to successfully implement BCI, practical <a href="https://doi.org/10.1186%2Fs12910-017-0220-y">ethical guidelines are needed</a> to better evaluate proposed neurotechnologies before deploying them.</p>
<h2>Utilitarianism</h2>
<p>One approach to tackling the ethical questions BCI raises is <a href="https://plato.stanford.edu/entries/consequentialism/">utilitarian</a>. Utilitarianism is an ethical theory that strives to maximize the happiness or well-being of everyone affected by an action or policy.</p>
<p>Enhancing soldiers might create the greatest good by improving a nation’s warfighting abilities, protecting military assets by keeping soldiers remote, and maintaining military readiness. Utilitarian defenders of neuroenhancement argue that emergent technologies like BCI are <a href="https://doi.org/10.1093/oso/9780190651145.003.0002">morally equivalent</a> to other widely accepted forms of brain enhancement. For example, stimulants like caffeine can improve the brain’s processing speed and may <a href="https://doi.org/10.1038/nn.3623">improve memory</a>.</p>
<p>However, <a href="https://doi.org/10.1007/s13347-022-00597-1">some worry</a> that utilitarian approaches to BCI have moral blind spots. In contrast to medical applications designed to help patients, military applications are designed to help a nation win wars. In the process, BCI may ride roughshod over individual rights, such as the right to be mentally and emotionally healthy.</p>
<p>For example, soldiers operating drone weaponry in remote warfare today report <a href="https://www.nytimes.com/2022/04/15/us/drones-airstrikes-ptsd.html">higher levels of emotional distress</a>, post-traumatic stress disorder and broken marriages compared to soldiers on the ground. Of course, soldiers routinely elect to sacrifice for the greater good. But if neuroenhancing becomes a job requirement, it could raise unique <a href="https://doi.org/10.1093/oso/9780190651145.003.0016">concerns about coercion</a>.</p>
<h2>Neurorights</h2>
<p>Another approach to the ethics of BCI, <a href="https://doi.org/10.3389%2Ffnhum.2021.701258">neurorights</a>, prioritizes certain ethical values even if doing so does not maximize overall well-being. </p>
<p>Proponents of neurorights champion individuals’ rights to <a href="https://doi.org/10.1186/s40504-017-0050-1">cognitive liberty, mental privacy, mental integrity and psychological continuity</a>. A right to cognitive liberty might bar unreasonable interference with a person’s mental state. A right to mental privacy might require ensuring a protected mental space, while a right to mental integrity would prohibit specific harms to a person’s mental states. Lastly, a right to psychological continuity might protect a person’s ability to maintain a coherent sense of themselves over time. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/498320/original/file-20221130-26-p9zqac.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Person using a brain-computer interface, wearing an EEG cap connected to a laptop" src="https://images.theconversation.com/files/498320/original/file-20221130-26-p9zqac.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/498320/original/file-20221130-26-p9zqac.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/498320/original/file-20221130-26-p9zqac.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/498320/original/file-20221130-26-p9zqac.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/498320/original/file-20221130-26-p9zqac.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/498320/original/file-20221130-26-p9zqac.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/498320/original/file-20221130-26-p9zqac.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=566&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Brain-computer interfaces can take different forms, such as an EEG cap or implant in the brain.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/brain-computer-interface-lab-equipments-royalty-free-image/1199869919">oonal/E+ via Getty Images</a></span>
</figcaption>
</figure>
<p>BCIs could interfere with neurorights in a variety of ways. For example, if a BCI tampers with how the world seems to a user, they might not be able to distinguish their own thoughts or emotions from altered versions of themselves. This may violate neurorights like mental privacy or mental integrity.</p>
<p>Yet soldiers already forfeit similar rights. For example, the U.S. military is allowed to <a href="https://www.mtsu.edu/first-amendment/article/1131/rights-of-military-personnel">restrict soldiers’ free speech and free exercise of religion</a> in ways that are not typically applied to the general public. Would infringing neurorights be any different? </p>
<h2>Human capabilities</h2>
<p>A <a href="https://plato.stanford.edu/entries/capability-approach/">human capability approach</a> insists that safeguarding certain human capabilities is crucial to protecting human dignity. While neurorights home in on an individual’s capacity to think, a capability view considers a <a href="https://www.hup.harvard.edu/catalog.php?isbn=9780674072350">broader range of what people can do and be</a>, such as the ability to be emotionally and physically healthy, move freely from place to place, relate with others and nature, exercise the senses and imagination, feel and express emotions, play and recreate, and regulate the immediate environment. </p>
<p>We find a capability approach compelling because it gives a more robust picture of humanness and respect for human dignity. Drawing on this view, <a href="https://doi.org/10.1007/s13347-022-00597-1">we have argued</a> that proposed BCI applications must reasonably protect all of a user’s central capabilities at a minimal threshold. BCI designed to enhance capabilities beyond average human capacities would need to be deployed in ways that realize the user’s goals, not just other people’s.</p>
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<figcaption><span class="caption">Neural interfaces like BCI raise questions about how far development can or should be taken.</span></figcaption>
</figure>
<p>For example, a bidirectional BCI that not only extracts and processes brain signals but delivers somatosensory feedback, such as sensations of pressure or temperature, back to the user would pose unreasonable risks if it disrupts a user’s ability to trust their own senses. Likewise, any technology, including BCIs, that controls a user’s movements would infringe on their dignity if it does not allow the user some ability to override it.</p>
<p>A limitation of a capability view is that it can be difficult to define what counts as a threshold capability. The view does not describe which new capabilities are worth pursuing. Yet, neuroenhancement could alter what is considered a standard threshold, and could eventually introduce entirely new human capabilities. Addressing this requires supplementing a capability approach with a fuller ethical analysis designed to answer these questions.</p><img src="https://counter.theconversation.com/content/194017/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>From warfare to entertainment and VR, brain-computer interface development has extended beyond prosthetics for patients with disabilities. Missing is full ethical consideration of the consequences.Nancy S. Jecker, Professor of Bioethics and Humanities, School of Medicine, University of WashingtonAndrew Ko, Assistant Professor of Neurological Surgery, School of Medicine, University of WashingtonLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1888942022-08-17T06:38:56Z2022-08-17T06:38:56ZShould we bring back the thylacine? We asked 5 experts<figure><img src="https://images.theconversation.com/files/479572/original/file-20220817-1775-wtiwro.jpg?ixlib=rb-1.1.0&rect=20%2C92%2C1160%2C729&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Tasmanian Museum and Art Gallery</span></span></figcaption></figure><p>In a newly announced partnership with Texas biotech company <a href="https://colossal.com/thylacine/">Colossal Biosciences</a>, Australian researchers are hoping their dream to bring back the extinct thylacine is a “<a href="https://www.unimelb.edu.au/newsroom/news/2022/august/lab-takes-giant-leap-toward-thylacine-de-extinction-with-colossal-genetic-engineering-technology-partnership2">giant leap</a>” closer to fruition.</p>
<p>Scientists at University of Melbourne’s TIGRR Lab (Thylacine Integrated Genetic Restoration Research) believe the new partnership, which brings Colossal’s expertise in CRISPR gene editing on board, could result in the first baby thylacine within a decade.</p>
<p>The genetic engineering firm made headlines in 2021 with the announcement of an ambitious plan to bring back <a href="https://theconversation.com/bringing-woolly-mammoths-back-from-extinction-might-not-be-such-a-bad-idea-ethicists-explain-167892">something akin to the woolly mammoth</a>, by producing elephant-mammoth hybrids or “mammophants”.</p>
<p>But de-extinction, as this type of research is known, is a highly controversial field. It’s often criticised for attempts at “playing God” or drawing attention away from the conservation of living species. So, should we bring back the thylacine? We asked five experts.</p>
<p><iframe id="tc-infographic-728" class="tc-infographic" height="400px" src="https://cdn.theconversation.com/infographics/728/61b1466b03511bf4e6f8e5e4f6c6aa363a67a45e/site/index.html" width="100%" style="border: none" frameborder="0"></iframe></p><img src="https://counter.theconversation.com/content/188894/count.gif" alt="The Conversation" width="1" height="1" />
A new biotech partnership could bring the first baby thylacine to life within 10 years. But de-extinction is controversial – should we even be doing this?Signe Dean, Science + Technology Editor, The ConversationLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1882172022-08-05T04:41:44Z2022-08-05T04:41:44ZWorld’s first ‘synthetic embryo’: why this research is more important than you think<figure><img src="https://images.theconversation.com/files/477798/original/file-20220805-19495-thzafi.jpeg?ixlib=rb-1.1.0&rect=1%2C2%2C963%2C464&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Mouse emobryo model in the lab from day 1 to 8.</span> <span class="attribution"><a class="source" href="https://wis-wander.weizmann.ac.il/life-sciences/without-egg-sperm-or-womb-synthetic-mouse-embryo-models-created-solely-stem-cells">The Wizemann Institute of Science</a></span></figcaption></figure><p>In what’s <a href="https://www.theguardian.com/science/2022/aug/03/scientists-create-worlds-first-synthetic-embryos">reported as a world-first achievement</a>, biologists have grown mouse embryo models in the lab without the need for fertilised eggs, embryos, or even a mouse – using only stem cells and a special incubator.</p>
<p>This achievement, <a href="https://www.cell.com/cell/fulltext/S0092-8674(22)00981-3">published in the journal Cell</a> by a team led by researchers from the Weizmann Institute of Science in Israel, is a very sophisticated model of what happens during early mouse embryo development – in the stage just after implantation. </p>
<p>This is a crucial stage: in humans, many pregnancies are lost around this stage, and we don’t really know why. Having models provides a way to better understand what can go wrong, and possibly insights into what we may be able to do about it. </p>
<h2>The tiniest cluster</h2>
<p>What’s particularly interesting about the newly published model is its very complex structure; not only does it mimic the cell specification and layout of an early-stage body plan – including precursors of heart, blood, brain and other organs – but also the “support” cells like those found in the placenta and other tissues required to establish and maintain a pregnancy.</p>
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<figcaption><span class="caption">This eight-day-old mouse embryo model has a beating heart, a yolk sac, a placenta and an emerging blood circulation. The Weizmann Institute of Science.</span></figcaption>
</figure>
<p>The earliest stages of pregnancy are difficult to study in most animals. The embryos are microscopic, tiny clusters of cells, difficult to locate and observe within the uterus. </p>
<p>But we do know that at this stage of development, things can go awry; for example, environmental factors can influence and interfere with development, or cells fail to receive the right signals to fully form the spinal cord, such as in <a href="https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/spina-bifida">spina bifida</a>. Using models like this, we can start to ask why.</p>
<p>However, even though these models are a powerful research tool, it is important to understand they are <em>not</em> embryos.</p>
<p>They replicate only some aspects of development, but not fully reproduce the cellular architecture and developmental potential of embryos derived after fertilisation of eggs by sperm – so-called natural embryos.</p>
<p>The team behind this work emphasises they were unable to develop these models beyond eight days, while a normal mouse pregnancy is 20 days long.</p>
<h2>Are ‘synthetic embryos’ of humans on the horizon?</h2>
<p>The field of embryo modelling is progressing rapidly, with new advances emerging every year.</p>
<p>In 2021, <a href="https://thenode.biologists.com/the-making-of-human-blastoids/outreach/">several teams</a> managed to get human pluripotent stem cells (cells that can turn into any other type of cell) to self-aggregate in a Petri dish, mimicking the “blastocyst”. This is the earliest stage of embryonic development just before <a href="https://www.mayoclinic.org/healthy-lifestyle/pregnancy-week-by-week/multimedia/fertilization-and-implantation/img-20008656">the complex process of implantation</a>, when a mass of cells attach to the wall of the uterus. </p>
<p>Researchers using these human embryo models, often called <a href="https://theconversation.com/researchers-have-grown-human-embryos-from-skin-cells-what-does-that-mean-and-is-it-ethical-157228">blastoids</a>, have even been able to start to explore implantation in a dish, but this process is much more challenging in humans than it is in mice.</p>
<p>Growing human embryo models of the same complexity that has now been achieved with a mouse model remains a distant proposition, but one we should still consider.</p>
<p>Importantly, we need to be aware of how representative such a model would be; a so-called synthetic embryo in a Petri dish will have its limitations on what it can teach us about human development, and we need to be conscious of that.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/researchers-have-grown-human-embryos-from-skin-cells-what-does-that-mean-and-is-it-ethical-157228">Researchers have grown 'human embryos' from skin cells. What does that mean, and is it ethical?</a>
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<h2>Ethical pitfalls</h2>
<p>No embryonic modelling can happen without a source of stem cells, so when it comes to thinking about the future use of this technology, it is vital to ask – where are these cells coming from? Are they human embryonic stem cells (derived from a blastocyst), or are they induced pluripotent stem cells? The latter can be made in the lab from skin, or blood cells, for example, or even derived from frozen samples.</p>
<p>An important consideration is whether using cells for this particular type of research – trying to mimic an embryo in a dish – requires any specific consent. We should be thinking more about how this area of research will be governed, when should it be used, and by whom. </p>
<p>However, it is important to recognise that there are existing laws and <a href="https://www.isscr.org/policy/guidelines-for-stem-cell-research-and-clinical-translation/key-topics/embryo-models">international stem cell research guidelines</a> that provide a framework to regulate this area of research.</p>
<p>In Australia, research involving human stem cell embryo models would require licensing, similar to that required for the use of natural human embryos under law that has been in place since 2002. However, <a href="https://www.nature.com/articles/d41586-021-01423-y">unlike other jurisdictions</a>, Australian law also dictates how long researchers can grow human embryo models, a restriction that some researchers would <a href="https://www.abc.net.au/radionational/programs/sciencefriction/change-to-14-day-rule-for-embryo-research/13382872">like to see changed</a>. </p>
<p>Regardless of these or other changes to how and when human embryo research is conducted, there needs to be greater community discourse around this subject before a decision is made.</p>
<p>There is a distinction between banning the use of this technology and technologies like cloning in humans for reproductive use, and allowing research using embryo models to advance our understanding of human development and developmental disorders that we can’t answer by any other means. </p>
<p>The science is rapidly advancing. While mostly in mice at this stage, now is the time to discuss what this means for humans, and consider where and how we draw the line in the sand as the science evolves.</p><img src="https://counter.theconversation.com/content/188217/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Megan Munsie receives funding from Australian Research Council, Medical Research Future Fund and the Novo Nordisk Foundation. She is the Vice President of the Australasian Society for Stem Cell Research, non-executive director of the National Stem Cell Foundation of Australia and a member of ethics and policy advisory committees for several national and international organisations including the International Society for Stem Cell Research. </span></em></p>In a huge milestone, researchers have grown a mouse embryo entirely from stem cells. Could humans be next?Megan Munsie, Professor Emerging Technologies (Stem Cells), The University of MelbourneLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1619992022-07-28T17:39:34Z2022-07-28T17:39:34ZKilling prisoners for transplants: Forced organ harvesting in China<figure><img src="https://images.theconversation.com/files/476240/original/file-20220727-1302-ejyizd.jpg?ixlib=rb-1.1.0&rect=288%2C387%2C2976%2C1938&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A limited supply of donor organs, paired with a massive demand for transplants, has fuelled the global organ trafficking industry, which exploits poor, underprivileged and persecuted members of society as a source of organs to be purchased by wealthy transplant tourists.</span> <span class="attribution"><span class="source">(AP Photo/Ebrahim Noroozi)</span></span></figcaption></figure><iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/killing-prisoners-for-transplants--forced-organ-harvesting-in-china" width="100%" height="400"></iframe>
<p>Organ transplantation is a <a href="https://www.cihi.ca/en/annual-statistics-on-organ-replacement-in-canada-2011-to-2020">life-saving therapy</a> for millions of patients and one of the <a href="https://www.who.int/health-topics/transplantation#tab=tab_1">greatest successes of modern medicine</a>. However, a limited supply of donor organs, paired with a massive demand for transplants, has fuelled the global organ trafficking industry which exploits poor, underprivileged and persecuted members of society as a source of organs to be purchased by wealthy transplant tourists.</p>
<p>Although <a href="https://www.unodc.org/unodc/en/human-trafficking/glo-act2/Countries/unodc-develops-toolkit-on-the-investigation-and-prosecution-of-trafficking-in-persons-for-organ-removal.html">this practice occurs in many countries</a>, the situation in China is particularly concerning. China is the only country in the world to have an industrial-scale organ trafficking practice that harvests organs from executed prisoners of conscience. This practice is known as forced organ harvesting. </p>
<p>To understand forced organ harvesting, it is useful to consider a hypothetical scenario: a patient in Canada with end-stage heart disease is in need of a life-saving cardiac transplant. </p>
<p>Doctors in Canada tell the patient he needs to go on a waiting list until a compatible donor dies under suitable conditions. This process can take weeks, months or even years. The patient then finds a transplant program in China that can schedule a cardiac transplant from a compatible donor weeks in advance. </p>
<p>This raises several important questions. Cardiac transplant can only come from deceased donors, so how can the hospital match this patient with a potential “deceased” donor weeks in advance? How did the hospital find this donor? How do they know when that donor will die? Has the donor consented to have their organs harvested? </p>
<h2>Distressing facts</h2>
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<figcaption><span class="caption">Explainer: China’s multi-billion-dollar murder for organs industry.</span></figcaption>
</figure>
<p>The answers to these questions are extremely distressing. China uses incarcerated <a href="https://chinatribunal.com/wp-content/uploads/2020/02/China-Tribunal-SHORT-FORM-CONCLUSION_Final.pdf">prisoners of conscience as an organ donor pool</a> to provide compatible transplants for patients. These prisoners or “donors” are executed and their organs harvested against their will, and used in a prolific and profitable transplant industry. </p>
<p>As transplant nephrologists and medical professionals, we aim to spread awareness about organ trafficking, particularly forced organ harvesting, to colleagues, institutions, patients and the public. We are involved with organizations like <a href="https://dafoh.org">Doctors Against Forced Organ Harvesting</a> and <a href="https://endtransplantabuse.org">International Coalition to End Transplant Abuse in China</a>, which have done considerable work in this area for over a decade.</p>
<p>China currently has the second-largest transplant program in the world. Transplant operations in China increased rapidly in the early 2000s without a corresponding rise in voluntary organ donors, which led to <a href="https://doi.org/10.1186/s12910-019-0406-6">questions about the source of the organs</a>. </p>
<p>During this period of rapid transplant growth, practitioners of the Buddhist Qi gong discipline known as Falun Gong, were being <a href="https://endtransplantabuse.org/introduction/?#introduction">detained, persecuted and killed in large numbers by the Chinese government</a>. Similarly, China in 2017 began a campaign of <a href="https://conservativepartyhumanrightscommission.co.uk/wp-content/uploads/2021/01/CPHRC-China-Report.pdf">mass detention, surveillance, sterilization and forced labour</a> against the Uyghur ethnic group of Xinjiang. </p>
<h2>Human rights investigations</h2>
<p>Concerns about forced organ harvesting began to surface in 2006-7 by the work of two international human rights lawyers, David Kilgour and David Matas, who were later <a href="https://doi.org/10.3325%2Fcmj.2016.57.219">nominated for a Nobel Peace Prize for their work</a>. The <a href="https://chinatribunal.com/">China Tribunal</a>, led by human rights lawyer Sir Geoffrey Nice, was formed in 2019 to independently investigate the claims of forced organ harvesting. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/476244/original/file-20220727-1268-iqbmrs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A man standing outdoors in front of signs opposing forced organ harvesting in China" src="https://images.theconversation.com/files/476244/original/file-20220727-1268-iqbmrs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/476244/original/file-20220727-1268-iqbmrs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/476244/original/file-20220727-1268-iqbmrs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/476244/original/file-20220727-1268-iqbmrs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/476244/original/file-20220727-1268-iqbmrs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/476244/original/file-20220727-1268-iqbmrs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/476244/original/file-20220727-1268-iqbmrs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=566&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Human rights lawyer David Kilgour addresses Falun Gong practitioners demonstrating against forced organ harvesting in China outside Australia’s Parliament House in Canberra, Australia in November 2016.</span>
<span class="attribution"><span class="source">(AP Photo/Rod McGuirk)</span></span>
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<p>The Tribunal examined multiple lines of evidence, including transplant numbers, medical testing of detained prisoners, recorded phone calls to transplant hospitals, as well as testimony from surgeons and prisoners. The final conclusion was issued in March of 2020 and “<a href="https://chinatribunal.com/wp-content/uploads/2020/02/China-Tribunal-SHORT-FORM-CONCLUSION_Final.pdf">confirmed beyond reasonable doubt” that China had been using executed prisoners of conscience as a source of transplant organs for many years</a>.</p>
<p>Despite Chinese transplant officials claiming significant transplant reform had taken place since 2015, recent evidence suggests that the barbaric practice of forced organ harvesting has continued. The <em>American Journal of Transplantation</em>, the world’s leading transplant journal, published a paper in April <a href="https://doi.org/10.1111/ajt.16969">that found that brain death had not been declared in many organ retrievals in China</a>, and that retrieval of the donor’s vital organs was the actual cause of death. In other words, these prisoners were being executed by removal of their organs for the purpose of transplantation. </p>
<p>The <a href="https://ishlt.org/">International Society of Heart and Lung Transplantation</a> issued a policy statement in June that excludes submissions that are “<a href="https://doi.org/10.1016/j.healun.2022.05.012">related to transplantation and involving either organs or tissue from human donors in the People’s Republic of China</a>.” </p>
<h2>Raising awareness</h2>
<p>Unfortunately, the use of unethical medical practices against marginalized groups is not new. The <a href="https://wienerholocaustlibrary.org/exhibition/science-and-suffering-victims-and-perpetrators-of-nazi-human-experimentation/">Nazis conducted horrific experiments</a> on Jewish victims in concentration camps. Soviet psychiatrists created a term known as <a href="https://www.bmj.com/content/bmj/293/6548/641.full.pdf">sluggish schizophrenia</a> to label political dissidents, depriving them of civic rights, employment and credibility. American researchers studied the effects of <a href="https://www.cdc.gov/tuskegee/timeline.htm">untreated syphilis in African Americans in the Tuskegee study</a>. </p>
<p>China has been executing prisoners of conscience and using their organs for transplantation for decades. Transplant physicians, medical professionals and the global community must raise awareness and pressure governments, institutions and hospitals to take action. </p>
<p>It is essential that we conduct due diligence and avoid collaborations where transparency regarding the source of organs cannot be guaranteed. We must protest the unjust and <a href="https://www.thestar.com/opinion/contributors/2022/07/25/the-largest-incarceration-of-a-minority-group-since-the-holocaust-canada-must-take-action-to-stop-the-genocide-of-uyghurs-in-china.html">inhumane incarceration and oppression of Uyghurs</a> and marginalized groups around the world. </p>
<p>We must encourage <a href="https://beadonor.ca/outside-ontario">organ donor registration</a> and <a href="https://lop.parl.ca/sites/PublicWebsite/default/en_CA/ResearchPublications/202029E">support initiatives</a> that increase donation to ultimately curb the demand for illegal organ trafficking. </p>
<p><em>Susie Hughes, executive director of End Transplant Abuse in China, co-authored this article.</em></p><img src="https://counter.theconversation.com/content/161999/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ali Iqbal is affiliated with International Coalition to End Transplant Abuse in China, and Doctors Against Forced Organ Harvesting. </span></em></p><p class="fine-print"><em><span>Aliya Khan receives funding from industry partners for the development of new molecules for osteoporosis and parathyroid disease. Funds received from Amgen, Alexion, Ascendis, Chugai, Radius, Ultragenyx </span></em></p>China’s industrial-scale organ trafficking practice has been executing prisoners of conscience and using their organs for transplantation for decades. This is known as forced organ harvesting.Ali Iqbal, Transplant Nephrologist, Assistant Professor of Medicine, McMaster UniversityAliya Khan, Clinical professor, Faculty of Health Sciences, McMaster UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1788662022-06-03T12:20:19Z2022-06-03T12:20:19ZGenetic paparazzi are right around the corner, and courts aren’t ready to confront the legal quagmire of DNA theft<figure><img src="https://images.theconversation.com/files/466687/original/file-20220601-48041-5tdwjf.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C2309%2C1299&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">DNA is a trove of personal information that can be hard to keep track of and protect. </span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/dna-royalty-free-image/1369527112">Boris Zhitkov/Moment via Getty Images</a></span></figcaption></figure><p>Every so often stories of <a href="https://ssrn.com/abstract=1684337">genetic theft</a>, or extreme precautions taken to avoid it, make headline news. So it was with a <a href="https://www.theweek.in/news/world/2022/02/12/explained-what-is-dna-theft-why-did-macron-refuse-russian-covid-test.html">picture</a> of French President Emmanuel Macron and Russian President Vladimir Putin sitting at <a href="https://www.reuters.com/world/europe/putin-kept-macron-distance-snubbing-covid-demands-sources-2022-02-10/">opposite ends of a very long table</a> after Macron declined to take a Russian PCR COVID-19 test in 2022. Many <a href="https://www.firstpost.com/world/dna-theft-fears-why-french-and-german-leaders-refused-to-take-russian-covid-test-10386501.html">speculated</a> that Macron refused due to security concerns that the Russians would take and use his DNA for nefarious purposes. German Chancellor Olaf Scholz <a href="https://www.theweek.co.uk/news/world-news/russia/955813/why-world-leaders-refuse-give-russia-dna">similarly refused</a> to take a Russian PCR COVID-19 test.</p>
<p>While these concerns may seem relatively new, pop star celebrity Madonna has been raising alarm bells about the potential for nonconsensual, surreptitious collection and testing of DNA for over a decade. She has <a href="https://geneticliteracyproject.org/2016/02/19/madonna-may-suffer-dna-paranoia/">hired cleaning crews</a> to sterilize her dressing rooms after concerts and requires her own new toilet seats at each stop of her tours. </p>
<p>At first, Madonna was ridiculed for having <a href="https://www.dailymail.co.uk/tvshowbiz/article-2163460/Paranoia-Madonna-orders-sterile-sweep-dressing-room-gig-prevent-fans-stealing-DNA.html">DNA paranoia</a>. But as more advanced, faster and cheaper genetic technologies have reached the consumer realm, these concerns seem not only reasonable, but justified.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/466685/original/file-20220601-66680-bioj3t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Putin and Macron sitting at opposite ends of a long table" src="https://images.theconversation.com/files/466685/original/file-20220601-66680-bioj3t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/466685/original/file-20220601-66680-bioj3t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=380&fit=crop&dpr=1 600w, https://images.theconversation.com/files/466685/original/file-20220601-66680-bioj3t.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=380&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/466685/original/file-20220601-66680-bioj3t.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=380&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/466685/original/file-20220601-66680-bioj3t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=478&fit=crop&dpr=1 754w, https://images.theconversation.com/files/466685/original/file-20220601-66680-bioj3t.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=478&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/466685/original/file-20220601-66680-bioj3t.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=478&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">For some, keeping one’s distance might be a preferable alternative to getting one’s DNA stolen.</span>
<span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/RussiaUkraineTalkingtoPutin/0778415f155a4cff94894c58f9fb6bb8">AP Photo/Pool Sputnik Kremlin</a></span>
</figcaption>
</figure>
<p><a href="https://law.emory.edu/faculty/faculty-profiles/vertinsky-profile.html">We are</a> <a href="https://scholar.google.com/citations?user=OKxLE-QAAAAJ&hl=en">law professors</a> who study how emerging technologies like genetic sequencing are regulated. We <a href="https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3559405">believe that</a> growing public interest in genetics has increased the likelihood that <a href="https://www.cambridge.org/core/books/abs/consumer-genetic-technologies/genetic-paparazzi/7B0D35C61C3CBD9DA3FE0D457C22BB9B">genetic paparazzi</a> with DNA collection kits may soon become as ubiquitous as ones with cameras. </p>
<p>While courts have for the most part <a href="https://www.forbes.com/sites/michellefabio/2018/04/23/madonna-loses-fight-to-reclaim-tupacs-letter-other-highly-personal-items/">managed to evade</a> dealing with the complexities of surreptitious DNA collection and testing of public figures, they won’t be able to avoid dealing with it for much longer. And when they do, they are going to run squarely into the <a href="https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3559405">limitations of existing legal frameworks</a> when it comes to genetics.</p>
<h2>Genetic information troves</h2>
<p>You <a href="https://journalofethics.ama-assn.org/article/shedding-privacy-along-our-genetic-material-what-constitutes-adequate-legal-protection-against/2016-03">leave your DNA behind you</a> everywhere you go. The strands of hair, fingernails, dead skin and saliva you shed as you move through your day are all collectible trails of DNA.</p>
<p>Genetic analysis can reveal not only personal information, such as existing health conditions or risk for developing certain diseases, but also core aspects of a person’s identity, such as their ancestry and the potential traits of their future children. In addition, as genetic technologies continue to evolve, fears about using surreptitiously collected genetic material for <a href="https://news.gsu.edu/2020/04/28/genetic-paparazzi-could-celebrity-dna-become-public-domain/">reproductive purposes</a> via <a href="https://doi.org/10.1093/jlb/lsv057">in vitro gametogenesis</a> become more than just paranoia.</p>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/Eb_o8hQNUFI?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">In vitro gametogenesis (IVG), while still in development, could allow prospective parents to create egg or sperm from other parts of the body, like skin.</span></figcaption>
</figure>
<p>Ultimately, taking an individual’s genetic material and information without their consent is an intrusion into a legal domain that is still considered <a href="https://doi.org/10.1017/9781108874106.012">deeply personal</a>. Despite this, there are <a href="https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3559405">few laws</a> protecting the interests of individuals regarding their genetic material and information. </p>
<h2>Existing legal frameworks</h2>
<p>When disputes involving genetic theft from public figures inevitably reach the courtroom, judges will need to confront fundamental questions about how genetics relates to personhood and identity, property, health and disease, intellectual property and reproductive rights. Such questions have already been raised in cases involving the <a href="https://www.virginialawreview.org/articles/genetic-privacy-after-carpenter/">use of genetics in law enforcement</a>, the <a href="https://www.science.org/content/article/us-supreme-court-strikes-down-human-gene-patents">patentability of DNA</a> and ownership of <a href="https://scholarship.law.nd.edu/ndlr/vol93/iss3/5/">discarded genetic materials</a>. </p>
<p>In each of these cases, courts focused on <a href="https://columbialawreview.org/content/dna-by-the-entirety-2/">only one dimension</a> of genetics, such as privacy rights or the value of genetic information for biomedical research. But this limited approach disregards <a href="https://doi.org/10.1111/j.1748-720x.2007.00161.x">other aspects</a>, such as the privacy of family members with shared genetics, or property and identity interests someone may have in genetic material discarded as part of a medical procedure.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1336309197697413123"}"></div></p>
<p>In the case of genetic paparazzi, courts will presumably try to fit complex questions about genetics into the legal framework of <a href="https://scholarship.law.upenn.edu/jcl/vol19/iss4/4/">privacy rights</a> because this is how they have approached other intrusions into the lives of public figures in the past. </p>
<p>Modern <a href="https://heinonline.org/HOL/LandingPage?handle=hein.journals/hclwpo11&div=16&id=&page=">U.S. privacy law</a> is a complex web of state and federal regulations governing how information can be acquired, accessed, stored and used. The right to privacy is limited by First Amendment protections on the freedom of speech and press, as well as Fourth Amendment prohibitions on unreasonable searches and seizure. <a href="https://scholarship.law.upenn.edu/cgi/viewcontent.cgi?article=1633&context=jcl">Public figures</a> face further restrictions on their privacy rights because they are objects of legitimate public interest. On the other hand, they also have publicity rights that control the commercial value of their unique personally identifying traits.</p>
<p>People whose genetic material has been taken without their consent may also raise a <a href="https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3357566">claim of conversion</a> that their property has been interfered with and lost. Courts in Florida are currently considering a conversion claim in a <a href="https://gizmodo.com/how-a-legal-brawl-between-two-rich-guys-could-change-ho-1824191082">private dispute</a> where the former CEO of Marvel Entertainment and his wife accused a millionaire businessman of stealing their DNA to prove that they were slandering him through a hate-mail campaign. This approach replaces the narrow legal framework of privacy with an even narrower framework of property, reducing genetics to an object that someone possesses.</p>
<h2>What the future may hold</h2>
<p>Under existing laws and the current state of genetic technology, most people don’t need to worry about surreptitious collection and use of genetic material in the way that public figures might. But genetic paparazzi cases will likely play an important role in determining what rights everyone else will or will not have.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/466689/original/file-20220601-48776-susuv1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Open 23andMe genetic testing kit" src="https://images.theconversation.com/files/466689/original/file-20220601-48776-susuv1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/466689/original/file-20220601-48776-susuv1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/466689/original/file-20220601-48776-susuv1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/466689/original/file-20220601-48776-susuv1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/466689/original/file-20220601-48776-susuv1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/466689/original/file-20220601-48776-susuv1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/466689/original/file-20220601-48776-susuv1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">As DNA testing technology advances, questions about genetic privacy and ownership will only become more complex.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/this-illustration-picture-shows-a-saliva-collection-kit-for-news-photo/1074407824">Eric Baradat/AFP via Getty Images</a></span>
</figcaption>
</figure>
<p>The U.S. Supreme Court is very unlikely to recognize new rights, or even affirm previously recognized rights, that are <a href="https://www.washingtonpost.com/outlook/2022/03/25/ketanji-brown-jackson-roe/">not explicitly mentioned in the Constitution</a>. Therefore, at least at the federal level, individual protections for genetic material and information are not likely to adapt to changing times.</p>
<p>This means that cases involving genetics are likely to fall within the purview of state legislatures and courts. But none of the states have <a href="https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3559405">adequately grappled</a> with the complexities of genetic legal claims. Even in states with laws specifically designed to protect genetic privacy, regulations cover only a <a href="https://doi.org/10.1038/nrg3113">narrow range</a> of genetic interests. Some laws, for example, may prohibit disclosure of genetic information, but not collection.</p>
<p>For better or for worse, how the courts rule in genetic paparazzi cases will shape how society thinks about genetic privacy and about individual rights regarding genetics more broadly.</p><img src="https://counter.theconversation.com/content/178866/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Both Macron and Madonna have expressed concerns about genetic privacy. As DNA collection and sequencing becomes increasingly commonplace, what may seem paranoid may instead be prescient.Liza Vertinsky, Professor of Law, University of MarylandYaniv Heled, Professor of Law, Georgia State UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1699132022-05-31T12:12:43Z2022-05-31T12:12:43ZWhat are HeLa cells? A cancer biologist explains<figure><img src="https://images.theconversation.com/files/465571/original/file-20220526-14-aez4rh.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C1022%2C771&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Cancer-causing viruses like HPV can cause cells to divide indefinitely and, in the case of Henrietta Lacks, become immortal.</span> <span class="attribution"><a class="source" href="https://flic.kr/p/A5Q7L1">Tom Deerinck/NIH via Flickr</a>, <a class="license" href="http://creativecommons.org/licenses/by-nc/4.0/">CC BY-NC</a></span></figcaption></figure><p>In an amazing twist of fate, the aggressive cervical cancer tumor that killed <a href="https://www.npr.org/2010/02/02/123232331/henrietta-lacks-a-donors-immortal-legacy">Henrietta Lacks</a>, a 31-year old African American mother, became an <a href="https://osp.od.nih.gov/scientific-sharing/hela-cells-timeline/">essential tool</a> that helped the biomedical field flourish in the 20th century. As a <a href="https://www.researchgate.net/scientific-contributions/Ivan-Martinez-2109620653">cancer researcher</a> who uses HeLa cells in my everyday work, even I sometimes find it hard to believe. </p>
<p>On Aug. 1, 2023, over 70 years after doctors took Lacks’ cells without her consent or knowledge, her family <a href="https://apnews.com/article/henrietta-lacks-hela-cells-thermo-fisher-scientific-bfba4a6c10396efa34c9b79a544f0729">reached a settlement</a> with biotech company Thermo Fisher. Lacks’ descendants had sued the company in 2021 for making billions of dollars off her cells. The family has not been previously been compensated.</p>
<p>Lacks’ cervical cancer cells, called “HeLa” after the first two letters of her first and last name, <a href="https://www.science.org/content/article/art-culture-developing-cell-lines">are immortal</a>, continuing to divide when most cells would die. This ability to survive through endless generations of cells is what makes them invaluable for scientists conducting experiments on human cells.</p>
<h2>Why HeLa cells matter</h2>
<p>Before HeLa cells, scientists wanted a way to grow and study human cells in the lab to conduct studies that are impossible to do in a living person. When Lacks’ cervical cancer cells were <a href="https://osp.od.nih.gov/scientific-sharing/hela-cells-landing/">successfully grown in a petri dish in 1951</a>, scientists now had a source of cost-effective and easy-to-use cells that expanded their ability to conduct research. From <a href="https://doi.org/10.1084/jem.97.5.695">polio</a> and <a href="https://doi.org/10.1016/j.cell.2020.07.024">COVID-19 vaccines</a> to <a href="https://doi.org/10.1002/jcp.22917">cancer research</a> and <a href="https://doi.org/10.1534/g3.113.005777">sequencing the human genome</a>, HeLa cells have played an enormous role in many scientific discoveries and advancements.</p>
<p>Henrietta Lacks’ story is also an <a href="https://www.wgbh.org/news/local-news/2022/05/17/thermo-fisher-seeks-dismissal-of-henrietta-lacks-familys-lawsuit-regarding-sale-of-her-cells">ongoing bioethics case</a>, because these cells were taken from her during a routine cervical cancer biopsy and were then given to researchers without her consent, as was <a href="https://doi.org/10.1146%2Fannurev-genom-083115-022536">common practice</a> at the time. The Lacks family has <a href="https://www.washingtonpost.com/local/legal-issues/henrietta-lacks-family-sues-company/2021/10/04/810ffa6c-2531-11ec-8831-a31e7b3de188_story.html">long attempted legal action</a> against companies they say have unfairly benefited from Henrietta’s cells. A <a href="https://www.npr.org/2010/02/02/123232331/henrietta-lacks-a-donors-immortal-legacy">2010 book</a> by journalist Rebecca Skloot details how HeLa cells affected both science and the Lacks family.</p>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/T3kR2dMCfOM?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">The Lacks family wasn’t aware that Henrietta’s cells had been harvested until Rolling Stone magazine journalist Michael Rogers contacted them two decades after her death.</span></figcaption>
</figure>
<p>But how did Lacks’ cells become immortal?</p>
<p>Lacks didn’t know that cells in her cervix were infected with a virus that causes one of the most common sexually transmitted diseases: <a href="https://www.cdc.gov/std/hpv/default.htm">human papillomavirus</a>, or HPV. There are more than 150 different types of HPVs, but only a small group are known to cause <a href="https://www.cancer.gov/about-cancer/causes-prevention/risk/infectious-agents/hpv-and-cancer">cervical cancer</a>. In fact, <a href="https://doi.org/10.1002/(SICI)1096-9896(199909)189:1%3C12::AID-PATH431%3E3.0.CO;2-F">99.7% of cervical cancers</a> are HPV positive. Fortunately, most people infected with high-risk HPVs are able to clear out the virus before it becomes cancerous. <a href="https://www.cdc.gov/vaccines/vpd/hpv/public/index.html">HPV vaccinations</a> can prevent over 90% of HPV-related cancers. But <a href="https://www.cdc.gov/cancer/hpv/basic_info/index.htm">10% of people</a> with HPV infections on their cervix develop cancer. Sadly, Henrietta was one of the unlucky ones.</p>
<p>Her misfortune has helped elucidate how HPV works. Since the <a href="https://www.nobelprize.org/prizes/medicine/2008/hausen/facts/">Nobel Prize-winning</a> 1976 discovery of <a href="http://www.ncbi.nlm.nih.gov/pubmed/175942">HPV’s essential role</a> in cervical cancer, many scientists, including me, have been investigating how HPV <a href="https://www.ncbi.nlm.nih.gov/books/NBK9929/">causes cancer</a>.</p>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/SPezZ6qKGFw?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">While some types of HPV cause warts on the skin, certain high-risk ones can cause cancer.</span></figcaption>
</figure>
<h2>Two proteins</h2>
<p>It turns out that the virus’ cancer-causing ability is linked to two proteins it produces. These viral proteins can <a href="https://pubmed.ncbi.nlm.nih.gov/1322242/">target and destroy</a> two major human proteins that protect against cancer, <a href="https://doi.org/10.1038/s41598-019-40094-8">p53 and retinoblastoma (Rb)</a>. P53 and Rb act as sentinels making sure cells don’t accumulate harmful genetic mutations and stop dividing after a set number of cycles. My research has focused on how HPV proteins interact with <a href="https://doi.org/10.1038/s41598-019-40094-8">tumor-suppressing</a> <a href="https://doi.org/10.1073/pnas.1017346108">proteins</a> in different types of human cells, including HeLa.</p>
<p>Most cells divide around <a href="https://doi.org/10.1016/0014-4827(65)90211-9">40 to 60 times</a> before they become too old to function properly and are naturally killed off. But HPV can allow cells to divide forever, because they attack the sentinels keeping uncontrolled division in check. After Lacks was infected with <a href="https://doi.org/10.1128/JVI.01747-15">HPV 18</a>, the second-most-common high-risk type of the virus, her cervical cells lost the ability to produce these sentinels. Without growth checks in place, her cells were able to divide indefinitely and became “immortal” – living on to this day both in test tubes and the <a href="https://www.immunology.org/hela-cells-1951">70,000 studies</a> they’ve made possible.</p>
<p><em>This article was updated to note the Lacks family’s settlement with Thermo Fisher on Aug. 1, 2023.</em></p><img src="https://counter.theconversation.com/content/169913/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ivan Martinez receives funding from the National Institute of Health (NIH), the American Cancer Society (ACS), and the National Science Foundation (NSF).</span></em></p>The immortal cancer cells of Henrietta Lacks revolutionized the fields of science, medicine and bioethics. And they still survive today, more than 70 years after her death.Ivan Martinez, Associate Professor of Microbiology, Immunology and Cell Biology, West Virginia UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1827452022-05-13T12:14:14Z2022-05-13T12:14:14ZWhat is ‘personhood’? The ethics question that needs a closer look in abortion debates<figure><img src="https://images.theconversation.com/files/462571/original/file-20220511-16280-ov3b1o.jpg?ixlib=rb-1.1.0&rect=70%2C8%2C5803%2C3901&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Debate about abortion is often a debate about rights -- but whose?</span> <span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/SupremeCourtAbortion/60e2430f34f24c27afd483e217f998f7/photo?Query=abortion&mediaType=photo&sortBy=arrivaldatetime:desc&dateRange=Anytime&totalCount=10431&currentItemNo=19">AP Photo/Jose Luis Magana</a></span></figcaption></figure><p>Controversy over abortion reached a fever pitch on May 2, 2022, when the leaked <a href="https://www.politico.com/f/?id=00000180-874f-dd36-a38c-c74f98520000">draft of a U.S. Supreme Court majority opinion</a> was published by Politico. If the draft’s key points are reflected in the final ruling, this would strike down <a href="https://supreme.justia.com/cases/federal/us/410/113/">Roe v. Wade</a>, a landmark decision that nearly 50 years ago established the right to choose an abortion.</p>
<p>Current constitutional law grants a right to have an abortion until a fetus <a href="https://doi.org/10.1093/jlb/lsaa059">becomes viable</a> – in other words, until there is a reasonable probability it could survive outside the womb with care. Today, this typically occurs between the 22nd and 24th weeks of pregnancy.</p>
<p>The ruling in Roe v. Wade was grounded on the idea that the U.S. Constitution <a href="https://supreme.justia.com/cases/federal/us/381/479/">protects privacy</a>, stemming from the <a href="https://constitution.congress.gov/browse/amendment-14/">14th Amendment</a>. However, the draft majority opinion, written by Justice Samuel Alito, argues Roe v. Wade should be overturned because the Constitution makes no mention of abortion.</p>
<p>While a final ruling is not expected before June 2022, the decision will not put to rest controversy over abortion. Why does the legalization of abortion continue to be hotly contested, nearly a half century after Roe v. Wade? This question is of great interest to me, <a href="https://depts.washington.edu/bhdept/nancy-s-jecker-phd-sheher">as a philosopher and bioethicist</a>, since I study philosophical problems that lie just beneath the surface of contemporary controversies like abortion.</p>
<h2>Defining personhood</h2>
<p>One underlying ethical concern is, “What is a person?” How people answer this question shapes how they think about a developing human being. When philosophers talk about “personhood,” they are referring to something or someone having <a href="https://plato.stanford.edu/archives/spr2021/entries/grounds-moral-status/">exceptionally high moral status</a>, often described as having a right to life, an inherent dignity, or mattering for one’s own sake. Non-persons may have lesser rights or value, but lack the full moral value associated with persons. </p>
<p>To be a person means having strong moral claims against others. For instance, persons have a claim to be treated fairly and a claim not to be interfered with. A healthy adult human being is often considered the clearest example of a person. Yet, most philosophers <a href="https://medicine.missouri.edu/centers-institutes-labs/health-ethics/faq/personhood#:%7E:text=It%20is%20common%20to%20assume,Homo%20sapiens%20(or%20related).">distinguish being a person from being human</a>, pointing out that no one disputes the fetus’s species, but many disagree about the fetus’s personhood.</p>
<p>In current law, fetal viability is often used to mark the beginning of personhood. However, <a href="https://doi.org/10.1093/jlb/lsaa059">viability varies</a> based on people’s access to intensive medical care. It also changes as medicine and technology advance.</p>
<p>Some <a href="https://capitol.texas.gov/tlodocs/87R/billtext/html/HB01515I.htm">state laws restricting abortion</a> identify the presence of a “fetal heartbeat” as morally significant and use this as a basis for personhood. However, many living things have beating hearts, and they are not all considered persons. And as physicians point out, though they may use the term “fetal heartbeat” in conversations with patients, the fetus <a href="https://www.npr.org/sections/health-shots/2021/09/02/1033727679/fetal-heartbeat-isnt-a-medical-term-but-its-still-used-in-laws-on-abortion">does not yet have a functioning heart</a> that generates sound during early development.</p>
<p>Defining the limits of personhood is especially dicey due to its far-reaching consequences. Personhood carries implications for how we treat <a href="https://www.harpercollins.com/products/animal-liberation-peter-singer?variant=32154016415778">animals</a>, <a href="https://global.oup.com/academic/product/a-sand-county-almanac-9780197500262?cc=us&lang=en&">ecosystems</a> and <a href="https://www.researchgate.net/publication/20865310_Anencephalic_infants_and_special_relationships">anencephalic infants, who are born with their cerebral cortex and large parts of their skull missing</a>. It also shapes the rights of <a href="https://plato.stanford.edu/entries/justice-intergenerational/">people who will be born in the future</a>, <a href="https://doi.org/10.1086/454366">people with disabilities</a> and <a href="https://global.oup.com/academic/product/the-ethics-of-killing-9780195169829?cc=us&lang=en&">individuals in a persistent vegetative state</a>. Debates over personhood have recently <a href="https://doi.org/10.1007/s13347-022-00531-5">extended to robots</a>. </p>
<p>Personhood is also important for issues at the end of life, such as disputes over <a href="https://blogs.scientificamerican.com/observations/what-is-death-exactly/">defining death</a>. Physicians have disagreed with families over <a href="https://doi.org/10.1038/nrneurol.2017.72">whether to declare a patient dead</a> or continue to offer medical interventions. <a href="https://academic.oup.com/jmp/article-abstract/26/5/527/1046807?redirectedFrom=PDF">Philosophers have debated</a> whether a person’s death occurs as soon as “higher” brain activity ceases – activity associated consciousness and cognition – or only after all brain activity ends. </p>
<h2>When personhood begins</h2>
<p>In short, there are plenty of reasons to figure out what personhood requires. Doing so demands wrestling with at least three common opposing views. </p>
<p>The first holds that fetuses qualify as persons from the moment of conception. Supporters say that from conception on, the developing fetus has “<a href="https://doi.org/10.2307/2026961">a future like ours</a>,” and abortion takes that future away. A variation on this theme is that at conception, a fetus has the full genetic code and therefore the <a href="https://spot.colorado.edu/%7Eheathwoo/Phil160,Fall02/noonan.htm">potential to become a person</a>, and this potential qualifies the fetus as a person. </p>
<figure class="align-center ">
<img alt="Men in suits speak in front of a poster that says " src="https://images.theconversation.com/files/462573/original/file-20220511-12-r5j7vs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/462573/original/file-20220511-12-r5j7vs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/462573/original/file-20220511-12-r5j7vs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/462573/original/file-20220511-12-r5j7vs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/462573/original/file-20220511-12-r5j7vs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=565&fit=crop&dpr=1 754w, https://images.theconversation.com/files/462573/original/file-20220511-12-r5j7vs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=565&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/462573/original/file-20220511-12-r5j7vs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=565&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">South Carolina Sen. Richard Cash reintroduces personhood legislation in 2019. The bill stipulated that life begins at conception, and from that moment a developing fetus has the same rights as other citizens.</span>
<span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/AbortionBan/6576cdd5ebd0403c94f31f01a0160900/photo?Query=abortion%20personhood&mediaType=photo&sortBy=arrivaldatetime:desc&dateRange=Anytime&totalCount=44&currentItemNo=0">AP Photo/Christina Myers</a></span>
</figcaption>
</figure>
<p>A second view regards personhood as arising at some point after conception and prior to birth. Some people reason that a human being’s moral status is not all-or-nothing, but, like human development, <a href="https://doi.org/10.1111/j.2041-6962.2008.tb00075.x">a matter of degree</a>. Others say that what matters is <a href="https://doi.org/10.1093/acprof:oso/9780198250401.001.0001">consciousness and other cognitive capacities</a>, thought to develop late in the second trimester.</p>
<p>Finally, a third view maintains that personhood begins at <a href="https://www.jstor.org/stable/2264919">birth or shortly thereafter</a>, because this is when an infant first acquires a sense of themselves and an interest in their own continued existence. Another source of support for the third view is Enlightenment philosopher Immanuel Kant’s claim <a href="https://www.jstor.org/stable/24562795">that what makes human beings morally special is their rationality</a> and capacity to be autonomous.</p>
<h2>Conflicts between persons</h2>
<p>Which view about personhood is right? If a society can’t agree about personhood, another strategy would be to imagine that one’s opponent’s view is right, and consider the implications.</p>
<p>Suppose, for example, that fetuses are persons. Since pregnant people are too, how should conflicts between them be settled? Suppose a pregnant person’s life were in jeopardy: whose right to life prevails? Some hold that under these conditions, abortion is justified by appealing to self-defense, but others say killing in self-defense <a href="https://doi.org/10.1111/j.1088-4963.1994.tb00005.x">is not justified</a> if the threat is “innocent,” without intention of doing harm.</p>
<p>Even when a pregnant person’s life is not in danger, some philosophers argue that a fetus’s right to life would not automatically override a pregnant person’s right to <a href="https://www.jstor.org/stable/2265091">live their life as they wish</a>. In a famous article, <a href="https://news.mit.edu/2020/professor-emerita-judith-jarvis-thomson-influential-philosopher-dies-1204">ethicist Judith Jarvis Thomson</a> used the hypothetical example of someone extremely ill, who could only be saved by actor Henry Fonda touching their brow. Must Fonda attend to them? She argued no: a right to life is not usually understood as a claim to whatever one needs to stay alive. Instead, it requires not having one’s life unjustly ended.</p>
<p>When weighing rights, it is important to consider the toll exacted when people wishing to terminate a pregnancy are prevented from doing so. A <a href="https://www.ansirh.org/research/ongoing/turnaway-study">decade-long study</a> showed people in this situation suffered adverse health effects; were less likely to have money for basic living expenses like food, housing and transportation; and were more likely to remain with violent partners. Since the risk of dying from childbirth is much greater than the risk of dying from legal abortion, a ban on abortion is projected to <a href="https://doi.org/10.1215/00703370-9585908">increase maternal mortality</a>.</p>
<p>The constitutional right to abortion will likely soon be settled. If the Supreme Court strikes down Roe v. Wade, this will raise yet more ethical questions – about fairness, for example, considering, that people living in poverty and members of <a href="https://www.pbs.org/newshour/nation/black-and-hispanic-people-have-the-most-to-lose-if-roe-is-overturned">minority groups would be among those most affected</a>, and that a majority of Americans <a href="https://www.pewresearch.org/religion/2022/05/06/americas-abortion-quandary/">support abortion rights</a>. </p>
<p>Only by shifting the conversation from politics and law to ethics will Americans start to reckon with what truly matters in abortion debates.</p><img src="https://counter.theconversation.com/content/182745/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Nancy S. Jecker does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The definition of personhood is a key and contested philosophical issue that has made legalized abortion such a longstanding controversy.Nancy S. Jecker, Professor of Bioethics and Humanities, School of Medicine, University of WashingtonLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1731372021-12-16T01:04:24Z2021-12-16T01:04:24ZShaming unvaccinated people has to stop. We’ve turned into an angry mob and it’s getting ugly<figure><img src="https://images.theconversation.com/files/436863/original/file-20211210-133881-j5pymq.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C2400%2C1695&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/men-pointing-on-each-other-412727410">Shutterstock</a></span></figcaption></figure><blockquote>
<p>Unvaccinated mother, 27, dies with coronavirus as her father calls for fines for people who refuse jab. </p>
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<p>This is the <a href="https://news.sky.com/story/covid-19-unvaccinated-mother-27-dies-with-coronavirus-as-her-father-calls-for-fines-for-people-who-refuse-jab-12477408">kind of headline</a> you may have seen over the past year, an example highlighting public shaming of unvaccinated people who die of COVID-19.</p>
<p>One news outlet <a href="https://newsone.com/playlist/famous-anti-vaxxers-who-have-died-from-covid-19/item/1/">compiled a list</a> of “notable anti-vaxxers who have died from COVID-19”. </p>
<p>There’s shaming <a href="https://www.nytimes.com/2021/11/27/style/anti-vaccine-deaths-social-media.html">on social media</a>, too. For instance, a whole <a href="https://www.cnbc.com/2021/10/16/reddit-r/hermancainaward-posts-stories-of-anti-vaxxers-dying-of-covid.html">Reddit channel</a> is devoted to mocking people who die after refusing the vaccine.</p>
<p>COVID-19 vaccinations save lives and reduce the need for hospitalisation. This is all important public health information.</p>
<p>Telling <a href="https://theconversation.com/why-telling-stories-could-be-a-more-powerful-way-of-convincing-some-people-to-take-a-covid-vaccine-than-just-the-facts-155050">relatable stories</a> and using emotive language about vaccination sends a message: getting vaccinated is good.</p>
<p>But the problem with the examples above is their tone and the way unvaccinated people are singled out. There’s also a murkier reason behind this shaming.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/why-telling-stories-could-be-a-more-powerful-way-of-convincing-some-people-to-take-a-covid-vaccine-than-just-the-facts-155050">Why telling stories could be a more powerful way of convincing some people to take a COVID vaccine than just the facts</a>
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<h2>Why do we shame people?</h2>
<p>Public shaming is not new. It is entrenched in human history and psychology. From an <a href="https://www.theatlantic.com/science/archive/2016/02/the-evolution-of-shaming/470544/">evolutionary perspective</a>, shame is a way of keeping individuals accountable to the other members of their community for their perceived anti-social behaviours.</p>
<p>Philosophers Guy Aitchison and Saladin Meckled-Garcia <a href="https://www.pdcnet.org/soctheorpract/content/soctheorpract_2021_0047_0001_0001_0031">say</a> online public shaming is a way of collectively punishing a person “for having a certain kind of moral character”. This punishment (or “reputational cost”) can be a way of enforcing norms in society.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/436862/original/file-20211210-13-1gdr0xs.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C998%2C531&q=45&auto=format&w=1000&fit=clip"><img alt="Man pointing finger, shaming other man, whose head is hung low" src="https://images.theconversation.com/files/436862/original/file-20211210-13-1gdr0xs.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C998%2C531&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/436862/original/file-20211210-13-1gdr0xs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=319&fit=crop&dpr=1 600w, https://images.theconversation.com/files/436862/original/file-20211210-13-1gdr0xs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=319&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/436862/original/file-20211210-13-1gdr0xs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=319&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/436862/original/file-20211210-13-1gdr0xs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=401&fit=crop&dpr=1 754w, https://images.theconversation.com/files/436862/original/file-20211210-13-1gdr0xs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=401&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/436862/original/file-20211210-13-1gdr0xs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=401&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Shaming is a way of keeping people accountable for their ‘wrongs’. It also helps us feel better about ourselves.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/men-pointing-on-each-other-412727410">Shutterstock</a></span>
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<p>However, shaming others is also a <a href="https://www.theatlantic.com/science/archive/2016/02/the-evolution-of-shaming/470544/">way of signalling</a> our own virtue and trustworthiness. Moralising about other people’s behaviour can help us feel better about ourselves. </p>
<p>The online world exacerbates this human tendency. It polarises two heavily moralised camps: the self-perceived good, responsible people on one side (the shaming ones), and the ones considered bad, irresponsible people on the other (the shamed ones). </p>
<p>Vaccination has become such a sensitive issue it easily triggers the instinct to shame others.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-power-of-public-shaming-for-good-and-for-ill-38920">The power of public shaming, for good and for ill</a>
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<h2>Do people deserve to be shamed?</h2>
<p>Shaming people for their health-related choices disregards <a href="https://jme.bmj.com/content/45/10/636">the complexities</a> about whether people are individually responsible for their own decisions.</p>
<p>Take obesity, another example associated with public shaming. The extent to which individuals are responsible for their obesity or for the lifestyle that causes obesity is complex. We need to consider issues including genes, environment, wealth, as well as choice. Indeed, shaming people for their obesity (“<a href="https://theconversation.com/walking-the-fine-line-between-healthy-weight-advice-and-fat-shaming-81759">fat shaming</a>”) is widely considered unacceptable.</p>
<p>Likewise, low levels of vaccine uptake in some communities is often linked to structural inequalities, including health inequality, and a resulting lack of trust. The blame for this situation is typically placed on broader society and institutions, and not on the affected groups or individuals.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1442967366829150208"}"></div></p>
<p>If someone cannot be blamed for something, then shaming them is not ethically justifiable.</p>
<p>In discussions of responsibility it is <a href="https://neweconomics.org/2018/11/take-responsibility-for-your-own-health">now common to focus</a> on “structural injustice” or “inequality” – the injustice of various social factors that shape choice and behaviour. </p>
<p>This applies not only to obesity, drugs, alcohol but also to vaccination decisions.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1409693980778848260"}"></div></p>
<p>Even where this is not the case, there has been a targeted, systematic and <a href="https://www.reuters.com/world/china/russia-china-sow-disinformation-undermine-trust-western-vaccines-eu-report-says-2021-04-28/">even state-sponsored misinformation campaign</a> about vaccines. People who are misinformed are victims, not perpetrators. </p>
<p>Finally, we should remember why medical ethics has designated autonomy and consent as foundational ethical values. Even where there is a clear expected benefit, and only very rare side effects, these won’t be shared equally. Many will have their lives saved. But some people will be the ones who suffer the harms. This a strong reason for respecting people’s decision about what risks to take on themselves.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/theres-no-need-to-pause-vaccine-rollouts-when-theres-a-safety-scare-give-the-public-the-facts-and-let-them-decide-157405">There's no need to pause vaccine rollouts when there's a safety scare. Give the public the facts and let them decide</a>
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<p>Barring any public health issue, an individual should make the decisions about health risks, whether they are from the disease or vaccines. Shaming them disregards the complexities of the distribution of risks and benefits, of the way individual values affect individual risk assessment, and of personal circumstances shaping individuals’ views on vaccines.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1375192134563680258"}"></div></p>
<p>Granted, public health ethics is a broader area and autonomy does not have the same weight there, because other people’s health interests are at stake. </p>
<p>But when public health issues do arise, it is up to public health authorities to limit autonomy through appropriate and more ethical strategies.</p>
<p>One of us (Savulescu) has <a href="https://jme.bmj.com/content/47/2/78">previously argued</a> for incentives to vaccinate. Mandatory vaccination (such as imposing fines, or other penalties such as limitations on access to certain spaces) would require a <a href="https://theconversation.com/why-covid-passes-are-not-discriminatory-in-the-way-you-think-they-are-171641">separate ethical discussion</a>, but could also be preferable in certain circumstances.</p>
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Read more:
<a href="https://theconversation.com/anger-grievance-resentment-we-need-to-understand-how-anti-vaxxers-feel-to-make-sense-of-their-actions-169829">Anger, grievance, resentment: we need to understand how anti-vaxxers feel to make sense of their actions</a>
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<h2>Shaming is a form of vigilantism</h2>
<p>One could plausibly imagine shaming pleases people who are vaccinated – especially the most self-righteous among them. But those who are opposed to vaccines, or who mistrust the government messages, are unlikely to be persuaded and may even be entrenched. </p>
<p>Even if shaming was effective, shaming wouldn’t necessarily be ethically justified. Not everything that is effective at achieving a goal is also ethical. Torture is, generally, not a justifiable way to obtain information, even if that information is credible and life-saving.</p>
<p>Shaming is a form of vigilantism, a mob behaviour. We have moved beyond burning witches or atheists, or lynching wrong-doers. We should stop doing these things also in the metaphorical sense. </p>
<p>We have parliaments and formal mechanisms for limiting behaviour, or incentivising it. We should leave it to these to regulate behaviour, not the media or the mob.</p><img src="https://counter.theconversation.com/content/173137/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Julian Savulescu receives funding from the Uehiro Foundation on Ethics and Education, NHMRC, Wellcome Trust, Australian Research Council, UK Research and Innovation (Arts and Humanities Research Council) as part of the Ethics Accelerator Award AH/V013947/1, WHO. He is a Partner Investigator on an Australian Research Council Linkage award (LP190100841, Oct 2020-2023) which involves industry partnership from Illumina. He does not personally receive any funds from Illumina. He is a paid member of the Bayer Pharmaceuticals Bioethics Committee.</span></em></p><p class="fine-print"><em><span>Alberto Giubilini receives funding from the Wellcome Trust. </span></em></p>We have moved beyond burning witches and lynching wrong-doers. So we should also stop shaming unvaccinated people. There are better ways to change behaviour.Julian Savulescu, Visiting Professor in Biomedical Ethics, Murdoch Children's Research Institute; Distinguished Visiting Professor in Law, University of Melbourne; Uehiro Chair in Practical Ethics, University of OxfordAlberto Giubilini, Senior Research Fellow, Oxford Uehiro Centre for Practical Ethics, University of OxfordLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1720532021-11-30T13:31:19Z2021-11-30T13:31:19ZWho’s in? Who’s out? The ethics of COVID-19 travel rules<figure><img src="https://images.theconversation.com/files/434365/original/file-20211129-13-xir7dr.jpg?ixlib=rb-1.1.0&rect=130%2C95%2C7535%2C5190&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">People wait at O. R. Tambo International Airport in Johannesburg, South Africa on Nov. 26, 2021, as many nations moved to stop air travel from the country. </span> <span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/VirusOutbreakNewVariant/1d9f4669cabe407ebc7b3c5c3ab4804b/photo?Query=south%20africa&mediaType=photo&sortBy=&dateRange=now-14d&totalCount=140&currentItemNo=83">AP Photo/Jerome Delay</a></span></figcaption></figure><p>Omicron, the latest COVID-19 variant dubbed a “<a href="https://www.who.int/news/item/26-11-2021-classification-of-omicron-(b.1.1.529)-sars-cov-2-variant-of-concern">variant of concern</a>” by the World Health Organization, has prompted <a href="https://www.nytimes.com/2021/11/28/world/middleeast/israel-morocco-travel-bans-omicron.html">new travel restrictions in many nations</a>. Although little is known about omicron, scientists have expressed concern that it may be <a href="https://theconversation.com/omicron-why-the-who-designated-it-a-variant-of-concern-172727">more transmissible</a> or vaccine-resistant than previous variants.</p>
<p>On Nov. 26, 2021, <a href="https://www.whitehouse.gov/briefing-room/statements-releases/2021/11/26/statement-by-president-joe-biden-on-the-omicron-covid-19-variant/">the United States</a> joined <a href="https://www.reuters.com/world/concerns-over-covid-variant-trigger-more-travel-curbs-southern-africa-2021-11-27/">a growing list of nations</a> banning travelers from countries in southern Africa, where the variant was first identified. The U.S. decision followed <a href="https://www.cdc.gov/coronavirus/2019-ncov/travelers/noncitizens-US-air-travel.html">another recent change</a>, which went into effect on Nov. 8, 2021, requiring non-citizens entering the U.S. by plane to be fully vaccinated, with limited exceptions. Everyone entering by plane, including citizens, must provide a negative COVID-19 test. </p>
<p>As bioethicists based in <a href="http://depts.washington.edu/bhdept/nancy-s-jecker-phd">the U.S.</a> and <a href="https://www.ug.edu.gh/phcl/staff/caesar-atuire">Ghana</a>, we explore the intersection of global health and ethics <a href="http://dx.doi.org/10.1136/medethics-2021-107555">in our research</a>. In the U.S. government’s recent rules for entry, we see far-reaching consequences that should prompt policymakers to consider not just science, but ethics.</p>
<h2>Buying time?</h2>
<p>There are multiple arguments to support travel rules imposing bans or requiring full vaccination. U.S. policy aims to “prevent further introduction, transmission, and spread of COVID-19 into and throughout the United States,” <a href="https://www.whitehouse.gov/briefing-room/presidential-actions/2021/10/25/a-proclamation-on-advancing-the-safe-resumption-of-global-travel-during-the-covid-19-pandemic/">President Joe Biden said</a> as he introduced the vaccination requirement. He noted that the Centers for Disease Control and Prevention “has determined that the best way to slow the spread of COVID-19, including preventing infection by the delta variant, is for individuals to get vaccinated.” </p>
<p>Ethically, the reason to contain the spread is to protect health and save lives. It could be argued that <a href="https://doi.org/10.1007/s10677-021-10160-0">a country’s first duty is to keep its own people safe</a>. However, many countries manage to protect their people while building in flexibility, such as by testing and quarantining visitors in lieu of travel bans or strict vaccination requirements. France, for example, tailors requirements to infection rates. It considers the U.S. <a href="https://www.diplomatie.gouv.fr/en/coming-to-france/coronavirus-advice-for-foreign-nationals-in-france/">an “orange” country</a>, meaning unvaccinated Americans must show negative COVID-19 tests and self-isolate for seven days. </p>
<p>One argument in favor of travel bans holds that they could slow the spread of the virus and buy time while scientists learn more. Anthony Fauci, the U.S. government’s top infectious disease advisor, <a href="https://www.reuters.com/world/us/us-braces-omicron-prepares-african-country-travel-ban-2021-11-28/">reportedly told the president</a> it would take two weeks to have definitive answers about omicron. A travel ban gives scientists <a href="https://www.ndtv.com/world-news/omicron-travel-bans-snap-defences-buy-time-as-scientists-race-to-decode-new-covid-variant-2626702">more time</a> to assess how well existing vaccines fare against new variants, and to <a href="https://www.cnbc.com/2021/11/26/pfizer-biontech-investigating-new-covid-variant-jj-testing-vaccine-against-it.html">begin reformulating vaccines</a> if needed.</p>
<p>An ethical argument for vaccine requirements is that people should be held accountable for their choices, including refusing vaccination. Yet throughout much of the world, particularly poorer regions, people cannot access vaccines. On average, only 6% of people in low-income countries <a href="https://ourworldindata.org/grapher/share-people-vaccinated-covid?country=High+income%7EUpper+middle+income%7ELower+middle+income%7ELow+income">have received a dose</a> of a COVID-19 vaccine, compared to 74% in rich countries.</p>
<h2>Science in flux</h2>
<p>Critics of travel bans and vaccine requirements point out that such controls are hardly foolproof. There is <a href="https://doi.org/10.1093/jtm/taab123">scant evidence</a> that travel restrictions reduce disease spread, particularly if they are not timed right and paired with <a href="https://doi.org/10.1126/science.aba9757">other prevention strategies</a>. Meanwhile, many studies have highlighted <a href="https://doi.org/10.1126/science.aba9757">the negative consequences</a> of international travel restrictions, such as xenophobia and mental health concerns.</p>
<p>Vaccines are currently highly effective at <a href="https://theconversation.com/how-many-lives-have-coronavirus-vaccines-saved-we-used-state-data-on-deaths-and-vaccination-rates-to-find-out-169513">preventing hospitalization and death</a> from COVID-19. But vaccinated people can <a href="https://theconversation.com/what-is-a-breakthrough-infection-6-questions-answered-about-catching-covid-19-after-vaccination-164909">still be infected</a> and <a href="https://www.cdc.gov/coronavirus/2019-ncov/vaccines/fully-vaccinated-guidance.html">transmit the virus</a>, although they are <a href="https://theconversation.com/no-vaccinated-people-are-not-just-as-infectious-as-unvaccinated-people-if-they-get-covid-171302">less likely</a> than unvaccinated people to be contagious, and less likely to get COVID-19 in the first place. Vaccines could also become less effective if <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8118153/">undercut by new virus variants</a>, though it is <a href="https://doi.org/10.1038/d41586-021-03552-w">not yet clear</a> if omicron reduces vaccine efficacy. Finally, there is uncertainty about <a href="https://doi.org/10.1016/S0140-6736(21)02249-2">how long</a> vaccine protection lasts. </p>
<p>Banning travelers in response to omicron is intended to keep people safe. But bans could backfire if they are seen as punitive, and could make countries <a href="https://www.npr.org/sections/coronavirus-live-updates/2021/11/28/1059619823/omicron-travel-bans-covid">less likely to share information about new variants</a>. After South Africa reported the omicron variant, its health minister said travel bans had made the country <a href="https://www.aljazeera.com/news/2021/11/26/south-africa-slams-unjustified-travel-bans-omicron-coronavirus-variant">a scapegoat</a> for a “worldwide problem,” while the foreign ministry claimed, “<a href="https://www.bbc.com/news/world-59442129">Excellent science should be applauded and not punished</a>.” Targeting African countries with travel bans “<a href="https://www.afro.who.int/news/who-stands-african-nations-and-calls-borders-remain-open">attacks global solidarity</a>,” the World Health Organization’s Africa director said in a statement. </p>
<figure class="align-center ">
<img alt="A man and woman embrace as she talks on a cellphone in an airport." src="https://images.theconversation.com/files/433548/original/file-20211123-26-4bq1f5.jpg?ixlib=rb-1.1.0&rect=228%2C103%2C4392%2C2972&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/433548/original/file-20211123-26-4bq1f5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/433548/original/file-20211123-26-4bq1f5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/433548/original/file-20211123-26-4bq1f5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/433548/original/file-20211123-26-4bq1f5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/433548/original/file-20211123-26-4bq1f5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/433548/original/file-20211123-26-4bq1f5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Jolly Dave, right, makes a phone call after arriving from India and being reunited with her boyfriend, Nirmit Shelat, at Newark Liberty International Airport, Nov. 8, 2021. The couple has not been able to see one another for nine months due to pandemic travel restrictions.</span>
<span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/VirusOutbreakTravel/4ca51f90ff794e399a92a1b25ecb95d0/photo?Query=airport%20travel%20u.s.&mediaType=photo&sortBy=&dateRange=now-30d&totalCount=67&currentItemNo=26">AP Photo/Seth Wenig</a></span>
</figcaption>
</figure>
<h2>Health and justice</h2>
<p>Travel bans and vaccine rules also raise equity concerns, given the dramatic disparity in vaccination rates across the globe. Travel restrictions disproportionately impact people from low-income nations where few vaccines are available.</p>
<p>It might appear that requiring vaccination for entry would not leave many people worse off, if people in poorer countries can rarely afford travel. Yet many people traveling to wealthier countries do so for jobs. Pre-pandemic, in 2019, the U.S. <a href="https://www.cfr.org/backgrounder/us-temporary-foreign-worker-visa-programs">issued more than 900,000 work-eligible visas</a>.</p>
<p>Many opponents of travel restrictions emphasize that new variants <a href="https://www.theguardian.com/commentisfree/2021/nov/26/new-covid-variant-rich-countries-hoarding-vaccines">are not surprising</a>, given how unequally vaccines have been distributed around the globe. When nations in southern Africa protested the new travel ban, they <a href="https://www.nytimes.com/2021/11/27/world/africa/coronavirus-omicron-africa.html">pointed to previous warnings</a> that the delay in rolling out vaccinations there would <a href="https://www.theatlantic.com/science/archive/2021/11/omicron-coronavirus-variant-what-we-know/620827/">increase the risk</a> of new variants.</p>
<p>Equity concerns are intensified by wealthy nations’ partial responsibility for poorer nations’ difficulty accessing vaccines. Early in the pandemic, rich countries struck advance market agreements and secured <a href="https://doi.org/10.1038/s41591-021-01288-8">as much as 500%</a> of their predicted vaccine need, exacerbating global vaccine scarcity and bidding up prices.</p>
<p>Wealthy nations pledged 1.8 billion doses of vaccine to low-income nations through COVAX, a global initiative to equitably distribute vaccines. Yet <a href="https://app.box.com/s/hk2ezb71vf0sla719jx34v0ehs0l22os">only 14% of them have been delivered</a>, according to <a href="https://peoplesvaccine.org/faq/">The People’s Vaccine</a>, an alliance calling for equal access to COVID-19 vaccines.</p>
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<p>Some ethicists have argued that governments should <a href="https://doi.org/10.1136/medethics-2021-107491">hold off on vaccination requirements</a> for international travelers until there is more universal access to vaccines, or allow alternatives, such as testing or vaccination upon arrival. The U.S. vaccine requirement for visitors does make <a href="https://www.cdc.gov/quarantine/order-safe-travel/technical-instructions.html">humanitarian exceptions</a> for travelers from countries where fewer than 10% of people are fully vaccinated. Still, it bars entry to people on a tourist or business visa, and citizens of many low- and middle-income nations where vaccination rates are low, but just above the bar. </p>
<h2>Do as I say, not as I do?</h2>
<p>The U.S. vaccination requirement also sounds hypocritical, because it does not apply to Americans. Unvaccinated citizens are allowed to reenter the country with a negative test result. Though free COVID-19 vaccines are widely available, <a href="https://ourworldindata.org/covid-vaccinations">just 58% of the U.S. population is fully vaccinated</a>.</p>
<p>In addition, U.S. rules exclude unvaccinated foreigners from countries with far lower COVID-19 rates. The U.S. has about 210 confirmed <a href="https://ourworldindata.org/covid-cases">cases per million people</a>, but excludes unvaccinated people from countries including India (6 per million), Paraguay (8 per million), Cambodia (2 per million) and Zimbabwe (3 per million), although <a href="https://ourworldindata.org/coronavirus-testing">lack of testing</a> may contribute to low case counts.</p>
<p>In our research, we argue global health can be protected by more equitable methods, like <a href="http://dx.doi.org/10.1136/medethics-2021-107824">following the WHO’s recommendation</a> to delay booster shots until 10% of people in every nation have received first shots; expanding vaccine manufacturing through <a href="https://jme.bmj.com/content/early/2021/10/06/medethics-2021-107824">waiving vaccine patents</a>; and showing <a href="https://onlinelibrary.wiley.com/doi/10.1002/hast.1250">solidarity in the global distribution of vaccines</a> by prioritizing countries with low ability to obtain vaccines. </p>
<p>Ultimately, the best way for wealthy nations to protect their own citizens is to vaccinate people across the globe. “If the variant shows up anywhere in the world, you can pretty much count on it being everywhere in the world,” as infectious disease specialist <a href="https://www.cidrap.umn.edu/about-us/cidrap-staff/michael-t-osterholm-phd-mph">Michael Osterholm</a> told <a href="https://www.nytimes.com/2021/11/26/us/us-officials-are-consulting-with-south-african-scientists-on-the-variant.html">the New York Times</a>. Vaccinating more people reduces the chance of <a href="https://doi.org/10.1056/NEJMsr2105280">new variants appearing that are impervious to vaccines</a>.</p><img src="https://counter.theconversation.com/content/172053/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Should countries require COVID-19 vaccination for entry while vaccines remain globally scarce?Nancy S. Jecker, Professor of Bioethics and Humanities, School of Medicine, University of WashingtonCaesar Atuire, Lecturer in Philosophy, University of GhanaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1710072021-11-17T13:18:00Z2021-11-17T13:18:00Z‘Off-label’ use is common in medicine – a bioethicist and legal philosopher explain why the COVID-19 vaccines are different<figure><img src="https://images.theconversation.com/files/431765/original/file-20211113-1788-1dxb739.jpg?ixlib=rb-1.1.0&rect=19%2C31%2C2098%2C1308&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Research suggests that about 20% of all prescriptions are administered "off-label."</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/off-label-concept-royalty-free-image/511790452?adppopup=true">Hafakot/iStock via Getty Images Plus</a></span></figcaption></figure><p>Kids ages 5 to 11 can now be vaccinated against COVID-19 following the Food and Drug Administration’s emergency use authorization of the <a href="https://theconversation.com/the-fda-authorizes-pfizers-covid-19-vaccine-for-children-ages-5-to-11-a-pediatrician-explains-how-the-drug-was-tested-for-safety-and-efficacy-169907">Pfizer Bio-NTech vaccine for this age group</a> and the <a href="https://www.cdc.gov/media/releases/2021/s1102-PediatricCOVID-19Vaccine.html">Centers for Disease Control and Prevention’s endorsement</a> in early November 2021.</p>
<p>Some parents <a href="https://www.kff.org/coronavirus-covid-19/poll-finding/kff-covid-19-vaccine-monitor-october-2021/">remain hesitant</a> about vaccinating their kids. But many around the country are <a href="https://spectrumlocalnews.com/nys/rochester/coronavirus/2021/11/05/rochester-area-pediatric-vaccination-appointments-filling-up-quickly">enthusiastically signing up</a> and <a href="https://www.fox19.com/2021/11/03/heavy-demand-vaccine-among-kids-5-11-cincinnati-childrens/">lining up</a> to get their elementary schoolers vaccinated. Yet parents of children under 5 are <a href="https://twitter.com/vegforward/status/1455901492284698639?s=20">still left wondering</a> when their children will be vaccinated. <a href="https://www.cnn.com/2021/11/03/health/covid-19-vaccines-children-younger-than-5-wellness/index.html">Experts suggest</a> it may not be before next year.</p>
<p>This wait could prompt parents and doctors alike to consider vaccinating against COVID-19 “<a href="https://doi.org/10.1016/j.vaccine.2017.02.056">off-label</a>.” Off-label refers to the administration of an FDA-approved product for a different population, use or <a href="https://theconversation.com/why-vaccine-doses-differ-for-babies-kids-teens-and-adults-an-immunologist-explains-how-your-immune-system-changes-as-you-mature-168708">dosage</a> than what it was approved for. It is a common practice in health care. </p>
<p>However, <a href="https://www.cnn.com/2021/08/23/health/covid-19-vaccine-off-label-children-fda-bn/index.html">the FDA</a> and the <a href="https://www.aappublications.org/news/2021/08/24/covid-vaccine-off-label-warning-082421">American Academy of Pediatrics</a> have warned against off-label use of COVID-19 vaccines in kids. And the CDC <a href="https://www.cdc.gov/vaccines/covid-19/vaccination-provider-support.html">prohibits it</a> based on the COVID-19 vaccine provider agreement it has with pharmacies, hospitals and clinics that are administering COVID-19 vaccines. </p>
<p>But is it ethical to withhold available vaccines from young kids? </p>
<p>We are philosophers with <a href="https://scholar.google.com/citations?user=AqiUIzAAAAAJ&hl=en">expertise in bioethics</a>, <a href="https://scholar.google.com/citations?user=mbfKbrgAAAAJ&hl=en">legal philosophy</a> and the application of philosophy to <a href="https://www.ippp.gmu.edu/">public policy</a>. <a href="https://doi.org/10.1002/hast.1296">Our newly published analysis</a> explores how prohibiting off-label use of COVID-19 vaccines in kids departs from ethical and legal norms. </p>
<p>Off-label vaccination is not a strategy for mass vaccination. But our research suggests that off-label use of COVID-19 vaccines is an ethically permissible option on a case-by-case basis. This is especially true for children at high risk of severe COVID-19 infection because of underlying conditions, or those at heightened exposure to COVID-19. </p>
<h2>What is off-label use?</h2>
<p>While off-label use may be a new concept to many, in medical practice it is <a href="https://doi.org/10.1001/archinte.166.9.1021">relatively routine</a>. Studies suggest that <a href="https://doi.org/10.7326/0003-4819-150-5-200903030-00108">approximately 20%</a> of all prescriptions are administered off-label. </p>
<p>In pediatrics, off-label use is even <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6677268/">more common</a> because fewer clinical trials of the kind required for the FDA approval process are conducted in children. The American Academy of Pediatrics <a href="https://www.aappublications.org/news/2016/12/26/OffLabel122616">endorses off-label use</a> as an available tool “to benefit the individual patient” based on a pediatrician’s clinical judgment and the best evidence available. A <a href="https://doi.org/10.1542/hpeds.2018-0168">recent study</a> suggests that over half of pediatric hospitalizations involve treatment with at least one off-label medication.</p>
<p><a href="https://doi.org/10.7326/0003-4819-150-5-200903030-00108">Reasons for off-label use</a> vary. Practically, the time and cost to conduct additional clinical trials on an already-approved medication is burdensome. Some products proven to be safe for use for a specific reason are later found to be effective for a new purpose. Off-label use helps make these treatments more accessible to other populations who may benefit from them.</p>
<p>Within medicine, off-label use is an ethically and legally sound practice. The FDA does not permit physicians to conduct experimental research on patients outside of clinical trials. But the <a href="https://doi.org/10.1080/01947649909511094">law does permit</a> physicians to prescribe FDA-approved products off-label for the purpose of enhancing a patient’s well-being. Doctors face no heightened risk of malpractice liability when they follow informed consent processes, when clinical data suggest that the anticipated benefits likely outweigh known risks and when the medication was prescribed for the patient’s benefit rather than for research.</p>
<h2>But what about COVID-19 vaccines?</h2>
<p>Despite the ethical and legal norms supporting off-label use, it’s more complicated when it comes to COVID-19 vaccines. </p>
<p>When the FDA <a href="https://www.fda.gov/news-events/press-announcements/fda-approves-first-covid-19-vaccine">“fully approved</a>” the Pfizer vaccine for people age 16 and older in August 2021, some parents, pediatricians and scientists <a href="https://www.wired.com/story/are-off-label-prescriptions-a-backdoor-to-giving-kids-covid-vaccines/">began debating</a> whether it could be administered “off-label” to younger kids who were not yet eligible.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/432105/original/file-20211116-17-1mjcotf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A child with long hair wearing a mask receives a Pfizer COVID-19 shot." src="https://images.theconversation.com/files/432105/original/file-20211116-17-1mjcotf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/432105/original/file-20211116-17-1mjcotf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/432105/original/file-20211116-17-1mjcotf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/432105/original/file-20211116-17-1mjcotf.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/432105/original/file-20211116-17-1mjcotf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/432105/original/file-20211116-17-1mjcotf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/432105/original/file-20211116-17-1mjcotf.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=502&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Kid ages 5 to 11 are now eligible for the Pfizer COVID-19 shot, but parents of younger children – even those at high risk of severe COVID-19 – still have months to wait for vaccines to be authorized for that age group.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/eight-year-old-child-receives-the-pfizer-biontech-covid-19-news-photo/1236307179?adppopup=true">Joseph Prezioso/AFP via Getty Images</a></span>
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<p>Off-label vaccination is less common than prescribing medication off-label. But other vaccines are at times administered off-label, especially <a href="https://pubmed.ncbi.nlm.nih.gov/9639369/">during outbreaks</a> of diseases like measles. The MMR (measles, mumps and rubella) vaccine is <a href="https://www.fda.gov/vaccines-blood-biologics/vaccines/measles-mumps-and-rubella-virus-vaccine-live">approved for kids older than 12 months only</a>. Yet even the CDC’s Advisory Committee on Immunization Practices <a href="https://health.mil/Reference-Center/Publications/2020/06/23/Standing-Orders-for-Administering-Measles-Mumps-Rubella-Vaccine-Pediatric">recommends</a> administering the MMR vaccine off-label to children between 6 and 12 months old when traveling internationally. </p>
<p>But in the case of COVID-19 vaccines, the CDC <a href="https://www.cdc.gov/vaccines/covid-19/vaccination-provider-support.html">vaccine provider agreement restricts</a> off-label vaccination. The agreement prohibits using federally purchased COVID-19 vaccines outside the ages for which vaccines are authorized or approved. The CDC <a href="https://www.cdc.gov/vaccines/covid-19/vaccination-provider-support.html">has implied</a> that providers who do not follow this agreement risk legal and financial liability and can be removed from the vaccine provider program. As <a href="https://crsreports.congress.gov/product/pdf/IN/IN11560">all COVID-19 vaccines administered in the U.S.</a> are purchased and supplied by the U.S. government, the agreement effectively prohibits any off-label use in children. </p>
<p>This means that medical providers are unable to offer off-label vaccination even to those children for whom it might be most ethically justified, namely those with underlying health conditions that place them at <a href="https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html">increased risk</a> of complications from COVID-19. </p>
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<h2>Looking forward</h2>
<p>The CDC has not explained its departure from ethical and legal norms of off-label use for the COVID-19 vaccines. </p>
<p>When considering emergency use authorization of the Pfizer vaccine for 5-to-11-year-olds, <a href="https://www.youtube.com/watch?v=laaL0_xKmmA">FDA advisory committee members</a> drew attention to the possibility of extremely rare side effects in kids that may arise only once the vaccine is administered more widely. The CDC has stressed that the safety of the vaccines will <a href="https://www.cdc.gov/media/releases/2021/s1102-PediatricCOVID-19Vaccine.html">continue to be closely monitored</a>.</p>
<p>Because of this, some members of the FDA’s vaccine committee <a href="https://www.statnews.com/2021/10/26/pfizer-covid19-vaccine-kids-vrbpac-fda/">expressed concern</a> about authorizing the vaccine for all kids this age, even while stressing its importance for high-risk kids. The committee ultimately <a href="https://www.npr.org/sections/health-shots/2021/10/26/1049372524/fda-panel-recommends-pfizer-vaccine-for-kids-ages-5-to-11">voted to recommend</a> authorization. But had off-label use of COVID-19 vaccines been on the table, some high-risk kids would have already had access to the vaccine. So would kids under 5.</p>
<p>For children under 5 with high-risk medical conditions or those living in communities that continue to have low overall <a href="https://www.nytimes.com/interactive/2020/us/covid-19-vaccine-doses.html">vaccination rates</a>, high community spread <a href="https://districtadministration.com/track-school-mask-rules-requirements-state-by-state/">or prohibitions</a> on other <a href="https://theconversation.com/evidence-shows-that-yes-masks-prevent-covid-19-and-surgical-masks-are-the-way-to-go-167963">evidence-based</a> mitigation strategies like indoor masking, their parents and pediatricians may want to decide that the benefits of off-label vaccination outweigh the risks. But they can’t. </p>
<p>Heightened awareness of off-label use practices might lead parents to wonder – or worry – about its frequent and routine use in pediatric care. One way to reduce off-label use in kids in general is to <a href="https://doi.org/10.1126/scitranslmed.3008043">increase pediatric clinical trials</a>. This requires funding for and interest from researchers and participants – including children and their parents. COVID-19 vaccines sparked an outpouring of interest in enrolling in clinical trials. This broadening of interest may yield more and faster access to “on-label” vaccines and other pharmaceuticals for children in the future.</p><img src="https://counter.theconversation.com/content/171007/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The CDC’s COVID-19 vaccine provider agreement prohibits health care professionals from administering the vaccines in people for whom they are not yet authorized or approved. But this departs from longstanding norms.Elizabeth Lanphier, Assistant Professor of Philosophy and Bioethicist, University of Cincinnati Shannon Fyfe, Assistant Professor of Philosophy and Adjunct Professor of Law, George Mason UniversityLicensed as Creative Commons – attribution, no derivatives.