tag:theconversation.com,2011:/uk/topics/biomedical-ethics-28000/articlesBiomedical ethics – The Conversation2024-02-02T04:02:45Ztag:theconversation.com,2011:article/2224972024-02-02T04:02:45Z2024-02-02T04:02:45ZNeuralink has put its first chip in a human brain. What could possibly go wrong?<figure><img src="https://images.theconversation.com/files/572980/original/file-20240202-25-n2iwc.jpg?ixlib=rb-1.1.0&rect=23%2C11%2C1973%2C1317&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Neuralink</span></span></figcaption></figure><p>Earlier this week, Elon Musk <a href="https://twitter.com/elonmusk/status/1752098683024220632">announced</a> his brain-computer interface company, Neuralink, had implanted a device in a human for the first time. The company’s <a href="https://neuralink.com/blog/first-clinical-trial-open-for-recruitment/">PRIME</a> study, approved by the US Food and Drug Administration last year, is testing a brain implant for “people with paralysis to control external devices with their thoughts”. </p>
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<p>In the past few years, Neuralink has faced investigation for <a href="https://www.theguardian.com/technology/2022/dec/20/neuralink-animal-testing-musk-investigation">mistreatment of lab animals</a> and seen the <a href="https://futurism.com/president-neuralink-exit">departure of several company executives</a>. Nevertheless, the PRIME trial is a significant milestone for a company less than ten years old. </p>
<p>However, Neuralink’s challenges are far from over. Implanting a device is just the beginning of a decades-long clinical project beset with competitors, financial hurdles and ethical quandaries. </p>
<h2>Decades of development</h2>
<p>The <a href="https://pubmed.ncbi.nlm.nih.gov/28275048/">first reported demonstration</a> of a brain-computer interface occurred in 1963. During a lecture at the University of Oxford, neuroscientist William Grey Walter bewildered his audience by linking one of his patient’s brains to the projector, where they advanced the slides of his presentation using only their thoughts.</p>
<p>However, the current wave of exploration in using brain-recording techniques to restore movement and communication to patients with severe paralysis began in the early 2000s. It draws on studies from the 1940s which measured the activity of single neurons, and more complex experiments on rats and monkeys in the 1990s.</p>
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<a href="https://theconversation.com/neuralink-put-a-chip-in-gertrude-the-pigs-brain-it-might-be-useful-one-day-145383">Neuralink put a chip in Gertrude the pig's brain. It might be useful one day</a>
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<p>Neuralink’s technology belongs to the next generation of recording devices. These have multiple electrodes, greater precision, and are safer, longer-lasting, and more compatible with the body. The <a href="https://www.jmir.org/2019/10/e16194/">Neuralink implant</a> is thinner, smaller and less obtrusive than the “Utah array” device, widely used in existing brain-computer interfaces, which has been available since 2005. </p>
<p>Neuralink’s device is implanted by a special robot which rapidly inserts polymer threads, each containing dozens of electrodes. In total, the device has 3,072 electrodes – dwarfing the 100 electrodes of the Utah array.</p>
<h2>Competitors</h2>
<p>Neuralink faces stiff competition in the race to commercialise the first next-generation brain-computer interface. </p>
<p>Arguably its most fierce competitor is an Australian company called <a href="https://theconversation.com/weve-been-connecting-brains-to-computers-longer-than-youd-expect-these-3-companies-are-leading-the-way-197023">Synchron</a>. This Melbourne-based start-up recently used a microelectrode mesh threaded through the blood vessels of the brain. This allowed paralysed patients to use tablets and smartphones, surf the internet, send emails, manage finances (and <a href="https://twitter.com/tomoxl/status/1473724411073212426?lang=en">post on X</a>, formerly Twitter). </p>
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<a href="https://theconversation.com/weve-been-connecting-brains-to-computers-longer-than-youd-expect-these-3-companies-are-leading-the-way-197023">We've been connecting brains to computers longer than you’d expect. These 3 companies are leading the way</a>
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<p>The Synchron implant is described as a “minimally invasive” brain-computer interface. It requires only a minor incision in the neck, rather than the elaborate neurosurgery required by Neuralink and most other brain-computer interfaces. </p>
<p>In 2021, Synchron received a “<a href="https://www.businesswire.com/news/home/20210728005305/en/Synchron-Receives-Green-Light-From-FDA-to-Begin-Breakthrough-Trial-of-Implantable-Brain-Computer-Interface-in-US">Breakthrough Device Designation</a>” in the United States, and is now onto its third clinical trial. </p>
<h2>Patient welfare</h2>
<p>This competitive landscape raises potential ethical issues concerning the welfare of patients in the PRIME study. For one, it is notoriously difficult to recruit participants to neural implant studies. Patients must meet strict criteria to be eligible, and the trials are inherently risky and ask a lot of participants. </p>
<p>Musk’s public profile may help Neuralink find and enrol suitable patients. However, the company will need to be prepared to provide long-term support (potentially decades) to patients. If things go wrong, patients may need support to live with the consequences; if things go right, Neuralink may need to make sure the devices don’t stop working.</p>
<p>In 2022, a company called Second Sight Medical Product demonstrated the risks. Second Sight made retinal implants to treat blindness. When the company <a href="https://spectrum.ieee.org/bionic-eye-obsolete?utm_source=digg">went bankrupt</a>, it left more than 350 patients around the world with obsolete implants and no way to remove them. </p>
<p>If Neuralink’s devices are successful, they are likely to transform patients’ lives. What happens if the company winds up operations because it can’t make a profit? A plan for long-term care is essential.</p>
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<p>What’s more, the considerable hype surrounding Neuralink may have implications for obtaining informed consent from potential participants. </p>
<p>Musk <a href="https://www.forbes.com/sites/johnkoetsier/2020/08/28/elon-musk-wants-to-put-a-fitbit-in-your-skull-to-summon-your-tesla/?sh=aee2ce6586a9">famously compared</a> the implant to a “Fitbit in your skull”. The device itself, Musk recently revealed, is misleadingly named “Telepathy”.</p>
<p>This techno-futurist language may give participants unrealistic expectations about the likelihood and kind of individual benefit. They may also underappreciate the risks, which could include severe brain damage.</p>
<h2>The way forward</h2>
<p>In this next chapter of the Neuralink odyssey, Musk and his team must maintain a strong commitment to research integrity and patient care. Neuralink’s establishment of a <a href="https://neuralink.com/patient-registry/">patient registry</a> to connect with patient communities is a step in the right direction. </p>
<p>Long-term planning and careful use of language will be necessary to preventing harm to patients and families. </p>
<p>The nightmare scenario for all neurotechnology research would be a repeat of Walter Freeman’s <a href="https://www.theguardian.com/science/2008/jan/13/neuroscience.medicalscience">disastrous pre-frontal lobotomy experiments</a> in the 1940s and 1950s. These had catastrophic consequences for patients and set research back by generations.</p><img src="https://counter.theconversation.com/content/222497/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Nathan Higgins is supported by an Australian Research Training Program Stipend.</span></em></p>The technology to link human brains with computers is developing quickly – but the path ahead is full of challenges.Nathan Higgins, PhD candidate in Psychology, Monash 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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<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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<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/2012342023-03-10T22:42:38Z2023-03-10T22:42:38ZSomatic genome editing therapies are becoming a reality – but debate over ethics, equitable access and governance continue<figure><img src="https://images.theconversation.com/files/514625/original/file-20230310-30-d4sd7f.jpg?ixlib=rb-1.1.0&rect=0%2C51%2C5760%2C3181&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Sangharsh Lohakare / Unsplash</span></span></figcaption></figure><p>Hundreds of experts from around the world gathered at the Francis Crick Institute in London this week for the Third International Summit on Human Genome Editing.</p>
<p>As at the first and second summits, held in Washington DC in 2015 and Hong Kong in 2018, leading experts in research shared their discoveries and discussed how they should be used. </p>
<p>The prospect of curing certain diseases by changing the parts of our DNA that cause them is becoming a reality. A somatic genome editing treatment for sickle cell disease is set to obtain <a href="https://www.barrons.com/articles/crispr-therapeutics-stock-fda-sickle-cell-gene-therapy-bf56a18c">regulatory approval</a> in the US later this year.</p>
<p>“Delivery” was a recurring issue: the delivery of equitable access to genome editing therapies, ongoing research to optimise delivery systems for genome editing apparatus and delivery of measures to foster discussions regarding regulation, governance, public and patient engagement.</p>
<p>American Nobel laureate David Baltimore aptly noted in his opening remarks, “new technologies continue to challenge our society”. The advent of CRISPR gene-editing technology, short for “Clustered Regularly Interspaced Short Palindromic Repeats”, has reaffirmed this proposition, igniting a global dialogue on its accompanying ethical and regulatory issues. </p>
<p>Five years after the last summit, CRISPR technology has continued to mature. It is an insurmountable task to capture all of the developments in both the science and ethics of CRISPR technology. These will be addressed with reference to the key themes raised during the summit – scientific developments, accessibility and the importance of public and patient engagement. </p>
<h2>Scientific developments</h2>
<p>Many new advances in genome editing techniques were presented. </p>
<p>American chemist and biologist David Liu reported on findings to use “<a href="https://www.nature.com/articles/d41587-019-00032-5">prime editing</a>” to treat genetic conditions such as Huntington’s disease and Friedreich’s ataxia. Unlike CRISPR, which makes a double stranded cut in the DNA, prime editing induces a single stranded cut. This makes it more versatile and precise for targeted deletion and insertion of genetic sequences.</p>
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<strong>
Read more:
<a href="https://theconversation.com/what-is-gene-editing-and-how-could-it-shape-our-future-199025">What is gene editing and how could it shape our future?</a>
</strong>
</em>
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<p>The summit heard about Vertex Pharmaceutical’s CRISPR-based treatment for sickle cell disease. The treatment is <a href="https://www.statnews.com/2023/03/07/crispr-sickle-cell-access/">expected</a> to become the first approved CRISPR genome editing therapy later this year.</p>
<p>There were also reports of research using CRISPR technology to treat diseases including Duchenne muscular dystrophy, cancer, HIV/AIDS, heart and muscle disease and inborn errors of immunity. American molecular biologist Eric Olson reported success in using base editing to <a href="https://www.science.org/doi/10.1126/science.ade1105">target CaMKIIδ</a>, a central regulator of cardiac signalling, in restoring cardiac function, as a treatment for myocardial infarction. </p>
<h2>Equitable access</h2>
<p>As research proceeds and treatments become available, questions about equitable access to the technology arise.</p>
<p>Equity extends beyond considerations of cost, access and ownership, to research engagement and output. This refers to capacity for knowledge production, data sovereignty and collection, access to latest knowledge, opportunities for collaboration and infrastructure to facilitate recruitment and trialling of new therapies. </p>
<p>Access issues are particularly relevant to lower- and middle-income countries, which may be compromised by systemic and structural inequities. Policy and political landscapes, economic constraints and scientific racism further perpetuate this inequity. </p>
<p>Gautam Dongre, representing the National Alliance of Sickle Cell Organisations India, described the reality of those living with sickle cell disease in India, where access to treatment is dire: </p>
<blockquote>
<p>“Our priority is to be alive, to receive gene therapy in the future.”</p>
</blockquote>
<h2>Patient perspectives and public engagement</h2>
<p>The summit also gave a platform to the experiences and concerns of people with lived experience of genetic disease. This included insights into the role and utility of public engagement, such as patient advocacy groups, do-it-yourself community groups and citizens’ juries.</p>
<p>A memorable presentation from Victoria Gray – the first recipient of Vertex Pharmaceutical’s CRISPR therapy for sickle cell disease – highlighted its life-changing impact. Gray says her CRISPR-modified “super cells” have cured her, enabling her to lead a disease-free life. The great potential of CRISPR technology can be realised, but importantly, it must be accessible to all.</p>
<h2>Concluding remarks</h2>
<p>How should CRISPR technology be regulated? This is a critical question.</p>
<p>As the summit’s organisers <a href="https://royalsociety.org/-/media/events/2023/03/human-genome-editing-summit/statement-from-the-organising-committee-of-the-third-international-summit-on-human-genome-editing.pdf">noted</a>, somatic genome editing has made “remarkable progress”, demonstrating its capability to “cure once-incurable diseases”. Further research is needed to target more diseases and enhance our understanding of risks and unintended consequences.</p>
<p>“Somatic” genome editing (which makes changes that are not heritable) is different to germline and heritable genome editing (which makes heritable changes). </p>
<p>Basic research for germline genome editing, which is not for reproduction purposes, is underway, for example, in gametes and embryos to explore aspects of early development. However, the organising committee concluded that heritable human genome editing for reproduction purposes “remains unacceptable at this time”. This is in light of the absence of preclinical evidence for safety and efficacy, legal authorisation and rigorous oversight and governance.</p>
<p>The concept of “safe enough” was interrogated – whose ethics should be applied to make this value judgment? Does the notion of safety traverse into areas beyond medically defined risks of physical harm? </p>
<p>It is notable that risk tolerance and perception of safety is dictated by an individual’s position in their country, culture, socio-economic status and lived experience. </p>
<p>In 2021, the World Health Organization published <a href="https://www.who.int/publications/i/item/9789240030060">a framework for governing human genome editing</a>. This retains its authority as an exemplar for a pathway toward an appropriate regulatory framework. While not overly prescriptive, it was designed to be adaptable for implementation in any jurisdiction. This year, Uganda plans to implement the framework as a pilot project. </p>
<p>The organising committee called for global action to explore measures for equitable and affordable pathways to access genome editing therapies. Ongoing global discussions are far from complete, and perhaps may never be complete, reinforcing the need for collective dialogue to proceed this summit. <em>And on with research, innovation and collaboration</em>.</p><img src="https://counter.theconversation.com/content/201234/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Olga C. Pandos is a recipient of the Australian Government Research Training Program Scholarship.</span></em></p>At the Third International Summit on Human Genome Editing, experts gather to discuss the path forward for CRISPR and other gene-editing technologiesOlga C. Pandos, PhD Candidate in Technology, Medical Law and Ethics, University of AdelaideLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1850812022-06-24T12:02:22Z2022-06-24T12:02:22ZFive billion people can’t afford surgery – a team of innovators could soon change this<figure><img src="https://images.theconversation.com/files/470537/original/file-20220623-51718-lguur2.jpg?ixlib=rb-1.1.0&rect=33%2C42%2C5573%2C3690&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Gasless laparoscopic surgery performed by Dr Biju Islary using the RAIS system.</span> <span class="attribution"><span class="source">Dr. Hampher Kynjing, Nazareth Hospital, Shillong</span>, <span class="license">Author provided</span></span></figcaption></figure><p>Have you or a loved one ever needed surgery? Imagine what your life would be like if you couldn’t have it. Billions of people around the world lack access to surgery because equipment and general anaesthesia are too expensive or unsuitable in their region. </p>
<p>When we think about technological progress people tend to picture faster, shinier, more hi-tech upgrades of what we already have. But sometimes developers can have more impact by remodelling technology with cheaper and simpler versions. </p>
<p>Our group at the University of Leeds is developing surgical technology for low-to-middle income countries and our first project was a simplified surgical tool for performing laparoscopic – or keyhole – surgery in low-resource settings where it was not possible before.</p>
<p>Surgical technology has never been more advanced. The NHS is <a href="https://www.sciencedirect.com/science/article/pii/S0168851022000562">adopting robotic surgical systems</a>, which give surgeons new levels of precision and skill to perform complex procedures for <a href="https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2758472">prostate, gynaecology and bowel surgery</a>. </p>
<p>But while these advances are impressive, they highlight a stark inequality; an estimated 5 billion people (more than two-thirds of the global population) <a href="https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)60160-X/fulltext">cannot afford surgery</a>. And yet, surgery is the primary treatment for one-third of diseases. Of the 313 million procedures undertaken worldwide each year, only 6% are performed in the poorest countries, where more than one-third of the world’s population lives. </p>
<h2>Why surgery is so hard to access</h2>
<p>A <a href="https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(14)70349-3/fulltext">shortage of trained surgeons</a>, healthcare costs and cultural barriers (many people turn to traditional healers first) prevent access, but all too often there is not enough <a href="https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)61127-1/fulltext">appropriate surgical equipment</a> available. By that we mean technology that fits the resources and services available in the <a href="https://gh.bmj.com/content/4/5/e001808">local healthcare setting</a> and does so at a cost affordable to local patients. </p>
<p>The shortage of technology designed for low-resource regions is because biotech firms focus on the major commercial markets in the EU, US and China and are reluctant to undercut more expensive, profitable technologies. </p>
<p>The solution is not as simple as providing low-income countries with the same surgical technology used in high-income countries. <a href="https://gh.bmj.com/node/135437.full">Well-meaning donations</a> of surgical equipment are often unused because they are too expensive to maintain. Communities struggle to source items such as air filters, cutting blades and CO₂ gas to make equipment work. </p>
<p>Research reveals 40-70% of medical devices in low-to-middle income countries are <a href="https://link.springer.com/article/10.1186/s12992-017-0280-2">broken, unused or unfit for purpose</a>.</p>
<h2>What we did</h2>
<p>We set out trying to develop new surgical equipment tailored to low and middle income countries, using “frugal innovation” as our guiding principle, meaning we were aiming <a href="https://academic.oup.com/bjs/article/106/2/e34/6120763?login=false">to do more with less</a>“. <a href="https://journals.lww.com/ijsgh/Fulltext/2021/01010/Designing_devices_for_global_surgery__evaluation.7.aspx?context=LatestArticles">We also</a> involved clinical staff throughout the process. </p>
<p><a href="https://ieeexplore.ieee.org/document/9780179">Our project</a> helped surgeons practice vital keyhole surgery in remote areas of rural India. In laparoscopic surgery, the patient’s abdomen is inflated with CO₂ gas and the surgeon operates using long instruments which go through small incisions into the space created. The technique, <a href="https://pubmed.ncbi.nlm.nih.gov/11019611/">pioneered in 1901</a> in Germany, revolutionised modern surgery, reducing their risk of infections and dramatically lowering the recovery time for patients.</p>
<p>Unfortunately, it requires general anaesthesia, and a reliable CO₂ supply, both of which are too expensive in low-resource regions. General anaesthesia must be administered by an anaesthetist. An alternative technique, <a href="https://link.springer.com/article/10.1007/s00464-015-4433-1">gasless laparoscopy</a>, uses a mechanical retractor to lift the abdomen and create space. This method doesn’t require CO₂ and allows the use of readily available spinal anaesthesia instead. </p>
<p>Spinal anaesthesia can be carried out by the operating surgeon, removing the need for a specialist anaesthetist. It means that patients in poorer countries can be given essential surgical treatments such as appendectomy, gall bladder removal, gynecological procedures. It also enables patients to return to work quickly, which is important because the longer patients are off work sick, the deeper they fall below the poverty line. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/469869/original/file-20220620-26-zat5h3.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/469869/original/file-20220620-26-zat5h3.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=337&fit=crop&dpr=1 600w, https://images.theconversation.com/files/469869/original/file-20220620-26-zat5h3.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=337&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/469869/original/file-20220620-26-zat5h3.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=337&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/469869/original/file-20220620-26-zat5h3.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=423&fit=crop&dpr=1 754w, https://images.theconversation.com/files/469869/original/file-20220620-26-zat5h3.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=423&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/469869/original/file-20220620-26-zat5h3.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=423&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Gasless laparoscopic surgery: the abdomenal wall is lifted by a ‘retractor’ to create space for instruments and a camera.</span>
</figcaption>
</figure>
<p>There is <a href="https://www.sciencedirect.com/science/article/pii/S1072751520320986">huge potential for gasless surgery</a> but uptake has been limited because the retractors are bulky, hard to use and maintain and are expensive.</p>
<p>Our designers teamed with surgeons to create a modern retraction system. We worked together to understand their needs and develop better retractors through repeated testing. The result is <a href="https://ieeexplore.ieee.org/document/9780179">"RAIS” (Retractor for Abdominal Insufflation-less Surgery)</a> which is being produced by our commercial partner (<a href="https://www.xlo.in/">Ortho Life Systems</a>). It costs $980 (£802), about one-third of the price of the older retractors. </p>
<p>The response from our surgical partners has been encouraging. Dr Biju Islary, surgeon and expert in gasless laparoscopy at Crofts Memorial Christian Hospital, India, said: “I have been involved from the start … this is a very good device to use.”</p>
<p>It is being used in ten medical centres in rural Indian states and we are working to expand this to new areas in India and around the world. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/470538/original/file-20220623-60671-rxz6ee.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/470538/original/file-20220623-60671-rxz6ee.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=187&fit=crop&dpr=1 600w, https://images.theconversation.com/files/470538/original/file-20220623-60671-rxz6ee.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=187&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/470538/original/file-20220623-60671-rxz6ee.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=187&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/470538/original/file-20220623-60671-rxz6ee.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=235&fit=crop&dpr=1 754w, https://images.theconversation.com/files/470538/original/file-20220623-60671-rxz6ee.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=235&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/470538/original/file-20220623-60671-rxz6ee.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=235&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The RAIS system has been used in clinical centres across India. Pictured left to right; Dr Biju Islary (Crofts Memorial Christian Hospital, Assam), Prof. Anurag Mishra (Maulana Azad Medical College, New Delhi), Dr Jesudian Gnanaraj (SEESHA, Coimbatore), Dr Gordon Rangad (Nazareth Hospital, Shillong)</span>
<span class="attribution"><span class="license">Author provided</span></span>
</figcaption>
</figure>
<h2>A problem close to home</h2>
<p>Even <a href="https://www.sciencedirect.com/science/article/pii/S2214999616307755">higher-income countries</a> struggle with <a href="https://research.one.surgery/beyond-technology-review-of-systemic-innovation-stories-in-global-surgery/">unequal access to surgical care</a>. Postcode lotteries create disparity in availability of healthcare, in places such as the US or UK. </p>
<p>The UK’s <a href="https://www.leedsth.nhs.uk/about-us/sustainability/news/2021/11/15/leeds-teaching-hospitals-nhs-trust-crowned-winners-of-the-green-surgery-challenge-2021">Green Surgery Challenge</a> has recently highlighted how frugal approaches could save the NHS money. For example, reusable instruments and surgical kit together with washable gowns and drapes, rather than single-use disposable items, are more environmentally friendly and cost effective.</p>
<p>Our aim is to form an international collaboration. We held the first <a href="https://surgicalinnovations.org/wpp/">International Congress for Innovation in Global Surgery</a> in April 2022. There is a lot of scope for improvement in access to gasless surgery and we will work together to improve the other technology involved, including camera systems and monitoring devices. </p>
<p>Technology innovation has an <a href="https://pubmed.ncbi.nlm.nih.gov/27890315/">important role to play in surgery</a>. People get excited about the release of a new video game or smartphone – but what could be more incredible than saving a life? Few products have as great an impact on people’s lives as accessible medical equipment. It is time for technology developers to think outside the box and create surgical products for low and medium-income countries – a market of billions.</p><img src="https://counter.theconversation.com/content/185081/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Pete Culmer receives funding from the UK Engineering and Science Research Council (EPSRC) and the UK National Institute of Health Research (NIHR). He is affiliated with the Institute of Mechanical Engineering (IMechE) Biomedical Engineering Division.
The authors would like to acknowledge the research team whose dedication, passion and expertise have made this work possible, with thanks to everyone including: Association of Rural Surgeons of India and International Federation of Rural Surgeons, Anurag Mishra, Lovenish Bains and team at the Maulana Azad Medical College, New Delhi, India, Tim Beacon, Medical Aid International, Sundeep Singh Sawhney, Tamandeep Singh Kochhar and team at Ortho Life Systems, New Delhi, India; Richard Hall and Philippa Bridges at Pd-m International Ltd, Thirsk, UK; Millie Marriott Webb, Cheryl Harris and David Jayne at the University of Leeds, UK</span></em></p><p class="fine-print"><em><span>Noel Aruparayil worked as a clinical research fellow funded by NIHR Global Health. He is on the Global Surgery Foundation committee for the Royal College of Surgeons of Edinburgh and sits on the advisory board for GASOC (Global Anaesthesia, Surgery and Obstetric Collaboration). </span></em></p><p class="fine-print"><em><span>Jesudian Gnanaraj 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>A team of doctors and academics worked together on back-to-basics surgical equipment that is already changing lives.Pete Culmer, Associate Professor in Surgical Technologies, University of LeedsJesudian Gnanaraj, Professor of electronics and instrumentation engineering, Karunya Institute of Technology and SciencesNoel Aruparayil, Clinical research fellow in global surgery, University of LeedsLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1849162022-06-23T11:47:38Z2022-06-23T11:47:38ZAbortion and bioethics: Principles to guide U.S. abortion debates<figure><img src="https://images.theconversation.com/files/469597/original/file-20220619-2246-jl5q1d.jpg?ixlib=rb-1.1.0&rect=6%2C3%2C2112%2C1404&q=45&auto=format&w=496&fit=clip" /><figcaption><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></figcaption></figure><p>On June 24, 2022, the U.S. Supreme Court <a href="https://www.supremecourt.gov/opinions/21pdf/19-1392_6j37.pdf">overruled Roe v. Wade</a>, <a href="https://supreme.justia.com/cases/federal/us/410/113/">the landmark 1973 decision</a> that established the nationwide right to choose an abortion. </p>
<p>For decades, rancorous debate about the ruling has often been dominated by <a href="https://www.theguardian.com/us-news/2022/may/06/abortion-midterms-elections-roe">politics</a>. Ethics garners less attention, although it lies at the heart of the legal controversy. <a href="https://depts.washington.edu/bhdept/nancy-s-jecker-phd-sheher">As a philosopher and bioethicist</a>, I study moral problems in medicine and health policy, including abortion.</p>
<p>Bioethical approaches to abortion often appeal to <a href="https://global.oup.com/ushe/product/principles-of-biomedical-ethics-9780190640873?cc=us&lang=en&">four principles</a>: respect patients’ autonomy; nonmaleficence, or “do no harm”; beneficence, or provide beneficial care; and justice. These principles were first developed during the 1970s <a href="https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/index.html">to guide research</a> involving human subjects. Today, they are essential guides for many doctors and ethicists <a href="https://depts.washington.edu/bhdept/ethics-medicine/bioethics-topics/articles/principles-bioethics">in challenging medical cases</a>.</p>
<h2>Patient autonomy</h2>
<p>The ethical principle of autonomy states that patients are entitled to make decisions about their own medical care when able. The American Medical Association’s Code of Medical Ethics recognizes a patient’s right to “<a href="https://www.ama-assn.org/delivering-care/ethics/informed-consent">receive information and ask questions about recommended treatments</a>” in order to “make well-considered decisions about care.” Respect for autonomy is enshrined in <a href="https://www.aamc.org/news-insights/what-informed-consent-really-means">laws governing informed consent</a>, which protect patients’ right to know the medical options available and make an informed voluntary decision. </p>
<p>Some bioethicists regard respect for autonomy as <a href="http://dx.doi.org/10.1136/jme.27.suppl_2.ii10">lending firm support</a> to the right to choose abortion, arguing that if a pregnant person wishes to end their pregnancy, the state should not interfere. According to one interpretation of this view, the principle of autonomy means that a person owns their body <a href="https://www.jstor.org/stable/2265091">and should be free to decide what happens in and to it</a>. </p>
<p>Abortion opponents do not necessarily challenge the soundness of respecting people’s autonomy, but may disagree about how to interpret this principle. Some regard a pregnant person as “<a href="https://doi.org/10.1111/bioe.12874">two patients</a>” – the pregnant person and the fetus. </p>
<p>One way to reconcile these views is to say that as an immature human being becomes “<a href="https://doi.org/10.1086/504621">increasingly self-conscious, rational and autonomous it is harmed to an increasing degree</a>,” as <a href="https://www.philosophy.ox.ac.uk/people/jeff-mcmahan">philosopher Jeff McMahan</a> writes. In this view, a late-stage fetus has more interest in its future than a fertilized egg, and therefore the later in pregnancy an abortion takes place, the more it may hinder the fetus’s developing interests. In the U.S., where <a href="http://dx.doi.org/10.15585/mmwr.ss7009a1">92.7% of abortions occur at or before 13 weeks’ gestation</a>, a pregnant person’s rights may often outweigh those attributed to the fetus. Later in pregnancy, however, rights attributed to the fetus may assume greater weight. Balancing these competing claims remains contentious. </p>
<h2>Nonmaleficence and beneficence</h2>
<p>The ethical principle of “do no harm” forbids intentionally harming or injuring a patient. It demands medically competent care that minimizes risks. Nonmaleficence is often paired with a principle of beneficence, a duty to benefit patients. Together, these principles <a href="https://doi.org/10.1136/bmj.291.6488.130">emphasize doing more good than harm</a>. </p>
<figure class="align-center ">
<img alt="A black blood pressure gauge sits on a table next to a small white tablet with writing on it." src="https://images.theconversation.com/files/469598/original/file-20220619-17-z59xpr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/469598/original/file-20220619-17-z59xpr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/469598/original/file-20220619-17-z59xpr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/469598/original/file-20220619-17-z59xpr.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/469598/original/file-20220619-17-z59xpr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/469598/original/file-20220619-17-z59xpr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/469598/original/file-20220619-17-z59xpr.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">The Hippocratic Oath, a traditional code of ethics for doctors, stresses doing no harm.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/blood-pressure-gauge-and-the-hippocratic-oath-in-royalty-free-image/1376323799?adppopup=true">Janko Maslovaric/iStock via Getty Images Plus</a></span>
</figcaption>
</figure>
<p>Minimizing the risk of harm figures prominently in <a href="https://www.who.int/health-topics/abortion#tab=tab_1">the World Health Organization’s opposition to bans on abortion</a> because pregnant people facing barriers to abortion often resort to unsafe methods, which represent a <a href="https://www.who.int/news-room/fact-sheets/detail/abortion">leading cause of avoidable maternal deaths and morbidities worldwide</a>. </p>
<p>Although <a href="https://www.who.int/news-room/fact-sheets/detail/abortion">97% of unsafe abortions occur in developing countries</a>, developed countries that have narrowed abortion access have produced unintended harms. <a href="https://www.nytimes.com/2022/06/12/world/europe/poland-abortion-ban.html">In Poland</a>, for example, doctors fearing prosecution have hesitated to administer cancer treatments during pregnancy or remove a fetus after a pregnant person’s water breaks early in the pregnancy, before the fetus is viable. In the U.S., restrictive abortion laws in some states, like Texas, have <a href="https://www.npr.org/sections/health-shots/2022/05/10/1097734167/in-texas-abortion-laws-inhibit-care-for-miscarriages">complicated care for miscarriages</a> and <a href="https://www.nytimes.com/2021/11/26/health/texas-abortion-law-risky-pregnancy.html">high-risk pregnancies</a>, putting pregnant people’s lives at risk.</p>
<p>However, Americans who favor overturning Roe are primarily concerned about fetal harm. <a href="https://theconversation.com/what-is-personhood-the-ethics-question-that-needs-a-closer-look-in-abortion-debates-182745">Regardless of whether or not the fetus is considered a person</a>, the fetus might have an interest in avoiding pain. Late in pregnancy, <a href="http://dx.doi.org/10.1136/medethics-2019-105701">some ethicists think that humane care for pregnant people should include minimizing fetal pain</a> irrespective of whether a pregnancy continues. Neuroscience teaches that the human <a href="https://www.scientificamerican.com/article/when-does-consciousness-arise/">capacity to experience feeling or sensation</a> develops between 24 and 28 weeks’ gestation. </p>
<h2>Justice</h2>
<p>Justice, a final principle of bioethics, requires treating similar cases similarly. If the pregnant person and fetus are moral equals, many argue that it would be unjust to kill the fetus except in self-defense, if the fetus threatens the pregnant person’s life. Others hold that even in self-defense, terminating the fetus’s life is wrong because a fetus is <a href="https://www.jstor.org/stable/2265226">not morally responsible for any threat it poses</a>. </p>
<p>Yet defenders of abortion point out that even if abortion results in the death of an innocent person, that is not its goal. If the ethics of an action is judged by its goals, then abortion might be justified in cases where it realizes an ethical aim, such as saving a woman’s life or protecting a family’s ability to care for their current children. Defenders of abortion also argue that even if the fetus has a right to life, <a href="https://www.jstor.org/stable/2265091">a person does not have a right to everything they need to stay alive</a>. For example, having a right to life does not entail a right to threaten another’s health or life, or ride roughshod over another’s life plans and goals.</p>
<p>Justice also deals with the fair distribution of benefits and burdens. Among wealthy countries, the U.S. has <a href="https://www.propublica.org/series/lost-mothers">the highest rate of deaths</a> linked to pregnancy and childbirth. Without legal protection for abortion, pregnancy and childbirth for Americans could become even more risky. Studies show that women are more likely to die while pregnant or shortly thereafter <a href="https://ajph.aphapublications.org/doi/full/10.2105/AJPH.2021.306396">in states with the most restrictive abortion policies</a>.</p>
<p>Minority groups may have <a href="https://apnews.com/article/abortion--supreme-court-racial-disparities-ec9495bbb071fabe7e9e7437305df5e2">the most to lose if the right to choose abortion is not upheld</a> because they <a href="https://journalofethics.ama-assn.org/article/seeking-causes-race-related-disparities-contraceptive-use/2014-10">utilize a disproportionate share of abortion services</a>. In Mississippi, for example, <a href="https://apnews.com/article/abortion--supreme-court-racial-disparities-ec9495bbb071fabe7e9e7437305df5e2">people of color represent 44% of the population, but 81% of those receiving abortions</a>. <a href="https://www.kff.org/womens-health-policy/state-indicator/abortions-by-race/?currentTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22%7D">Other states follow a similar pattern,</a> leading some health activists to conclude that <a href="https://apnews.com/article/abortion--supreme-court-racial-disparities-ec9495bbb071fabe7e9e7437305df5e2">“abortion restrictions are racist.”</a> </p>
<p>Other marginalized groups, including low-income families, could also be hard hit by abortion restrictions because <a href="https://fortune.com/2022/05/03/abortions-costs-rise-more-expensive-roe-v-wade-overturned/">abortions are expected to get pricier</a>.</p>
<p>Politics aside, abortion raises profound ethical questions that remain unsettled, which courts are left to settle using the blunt instrument of law. In this sense, abortion “<a href="https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(19)30581-1/fulltext">begins as a moral argument and ends as a legal argument</a>,” in the words of law and ethics scholar <a href="https://www.feinberg.northwestern.edu/faculty-profiles/az/profile.html?xid=16112">Katherine Watson</a>.</p>
<p>Putting to rest legal controversies surrounding abortion would require reaching moral consensus. Short of that, articulating our own moral views and understanding others’ can bring all sides closer to a <a href="https://doi.org/10.1111/j.1088-4963.2005.00035.x">principled compromise</a>.</p><img src="https://counter.theconversation.com/content/184916/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>A bioethicist explains the four ethical principles that guide medical practitioners’ thinking about abortion, such as autonomy and justice.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/1698202021-11-01T16:26:59Z2021-11-01T16:26:59ZEthical decisions: Weighing risks and benefits of approving COVID-19 vaccination in children ages 5-11<figure><img src="https://images.theconversation.com/files/429411/original/file-20211029-23-1u7vp0d.jpg?ixlib=rb-1.1.0&rect=257%2C74%2C4082%2C2809&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Ethics are important to vaccination decisions because while science can clarify some of the costs and benefits, it cannot tell us which costs and benefits matter most to us.</span> <span class="attribution"><span class="source">THE CANADIAN PRESS/Frank Gunn </span></span></figcaption></figure><iframe style="width: 100%; height: 175px; border: none; position: relative; z-index: 1;" allowtransparency="" src="https://narrations.ad-auris.com/widget/the-conversation-canada/ethical-decisions--weighing-risks-and-benefits-of-approving-covid-19-vaccination-in-children-ages-5-11" width="100%" height="400"></iframe>
<p>The U.S. Food and Drug Administration has approved <a href="https://www.cbc.ca/news/world/fda-approves-pfizer-children-1.6229798">Pfizer’s COVID-19 vaccine for use in children ages five to 11</a>. Pfizer’s <a href="https://www.pfizer.com/news/press-release/press-release-detail/pfizer-and-biontech-announce-positive-topline-results">clinical trial results</a> indicate the vaccine is safe and effective in this age group. </p>
<p>This is an important development. <a href="https://globalnews.ca/news/8250271/covid-19-bc-modelling-data-children/">COVID-19 infections</a> <a href="https://www.cbc.ca/news/canada/calgary/covid-alberta-kids-1.6208827">are on the rise</a> <a href="https://www.cbc.ca/news/canada/saskatchewan/covid-19-saskatchewan-october-9-1.6206509">in children</a> <a href="https://www.thestar.com/politics/provincial/2021/09/28/ontarios-new-covid-19-cases-could-drop-to-200-a-day-or-rise-to-5000-latest-modelling-projects.html">across</a> <a href="https://www.cbc.ca/news/canada/new-brunswick/new-brunswick-school-covid-19-1.6202893">Canada</a>.</p>
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<img alt="" src="https://images.theconversation.com/files/410911/original/file-20210712-19-geybnm.png?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/410911/original/file-20210712-19-geybnm.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=600&fit=crop&dpr=1 600w, https://images.theconversation.com/files/410911/original/file-20210712-19-geybnm.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=600&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/410911/original/file-20210712-19-geybnm.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=600&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/410911/original/file-20210712-19-geybnm.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=754&fit=crop&dpr=1 754w, https://images.theconversation.com/files/410911/original/file-20210712-19-geybnm.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=754&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/410911/original/file-20210712-19-geybnm.png?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">
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<span class="attribution"><a class="source" href="https://theconversation.com/ca/topics/vaccine-confidence-in-canada-107061">Click here for more articles in our series about vaccine confidence.</a></span>
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<p>It is now up to <a href="https://www.cbc.ca/news/health/pfizer-seeks-kids-covid-vaccine-approval-health-canada-1.6215547">Health Canada</a> to consider the data and to decide whether to authorize this COVID-19 vaccine for children. Once it is authorized in Canada, the <a href="https://www.canada.ca/en/public-health/services/immunization/national-advisory-committee-on-immunization-naci.html">National Advisory Committee on Immunization</a> (NACI) will have to decide whether to recommend vaccination for all children in this age group. </p>
<p>This raises the question of how this decision ought to be made.</p>
<h2>Making an ethical decision</h2>
<p>As a moral philosopher who has <a href="http://blog.practicalethics.ox.ac.uk/2021/08/we-should-vaccinate-children-in-high-income-countries-against-covid-19-too/">collaboratively researched</a> <a href="https://doi.org/10.1136/bmj.n1687">ethical issues relating to the vaccination of children</a>, I believe it is important to answer this question, for two reasons. </p>
<p>First, whatever the decision, the principles on which it is based — and should be based — must be clear and transparent. </p>
<p>Second, surprisingly little attention has been paid to this issue in Canada, despite the decision to vaccinate children being a matter <a href="https://www.politico.eu/article/coronavirus-vaccine-children-ethics-science/">of science and ethics</a>. Science can clarify some of the costs and benefits of vaccination, but it cannot tell us which costs and benefits matter and when a cost-benefit ratio is favourable.</p>
<p>Fortunately, there is no need to generate a decision-making procedure from scratch. The procedure used by the <a href="https://www.gov.uk/government/groups/joint-committee-on-vaccination-and-immunisation">United Kingdom’s Joint Committee on Vaccination and Immunisation</a> (JCVI) in deciding whether to vaccinate healthy children aged 12-15 in the U.K. can provide important lessons about what not to do.</p>
<h2>Risks and benefits</h2>
<p>The most important factor is whether the benefits of vaccination outweigh its risks, and the degree to which the benefits outweigh the risks. In weighing these, the JCVI relied on what it called the “health perspective.” </p>
<p>Reasoning from this perspective, the JCVI held (in a <a href="https://www.gov.uk/government/publications/covid-19-vaccination-of-children-and-young-people-aged-12-to-17-years-jcvi-statement/jvci-statement-on-covid-19-vaccination-of-children-and-young-people-aged-12-to-17-years-15-july-2021">series</a> of <a href="https://www.gov.uk/government/publications/jcvi-statement-august-2021-covid-19-vaccination-of-children-and-young-people-aged-12-to-17-years/jcvi-statement-on-covid-19-vaccination-of-children-and-young-people-aged-12-to-17-years-4-august-2021">public</a> <a href="https://www.gov.uk/government/publications/jcvi-statement-september-2021-covid-19-vaccination-of-children-aged-12-to-15-years/jcvi-statement-on-covid-19-vaccination-of-children-aged-12-to-15-years-3-september-2021">statements</a>) that the chief benefits of vaccination against COVID-19 were the prevention of death, hospitalization, intensive care unit (ICU) admissions and pediatric inflammatory multisystem syndrome (PIMS) or multisystem inflammatory syndrome (MIS-C). </p>
<p>The chief harms of vaccination were myocarditis, or inflammation of the heart, and pericarditis, inflammation of the thin sack surrounding the heart, though it said these were rare and “typically self-limiting and resolved within a short time.”</p>
<p>The JCVI argued that the benefits of vaccination in this age group are only “marginally greater” than the harms and that therefore vaccination would not be offered to all members of this group.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/429412/original/file-20211029-25-1xe05b5.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A boy wearing a face mask getting an injection" src="https://images.theconversation.com/files/429412/original/file-20211029-25-1xe05b5.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/429412/original/file-20211029-25-1xe05b5.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/429412/original/file-20211029-25-1xe05b5.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/429412/original/file-20211029-25-1xe05b5.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/429412/original/file-20211029-25-1xe05b5.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/429412/original/file-20211029-25-1xe05b5.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/429412/original/file-20211029-25-1xe05b5.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">Twelve-year-old Sam Hallett got his shot at the Aboriginal Health and Wellness Centre in Winnipeg shortly after Health Canada approved COVID-19 vaccination in his age group in May.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Winnipeg Free Press-Mike Deal</span></span>
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<p><a href="https://www.canada.ca/en/public-health/services/immunization/national-advisory-committee-on-immunization-naci/recommendations-use-covid-19-vaccines/mrna-adolescents.html">NACI disagreed</a>, but did not outline the ethical principles it relied on in recommending vaccination for children ages 12-17.</p>
<p>JCVI’s decision not to offer all children vaccination against COVID-19 was flawed in numerous respects. (It was later <a href="https://www.gov.uk/government/publications/universal-vaccination-of-children-and-young-people-aged-12-to-15-years-against-covid-19/universal-vaccination-of-children-and-young-people-aged-12-to-15-years-against-covid-19">overruled by the chief medical officers of the U.K.’s four nations</a>.) NACI will do well to avoid these mistakes in making its decision about vaccinating children ages five to 11.</p>
<p>The Independent Scientific Advisory Group for Emergencies (Independent SAGE, a group of British scientists offering independent scientific advice on the prevention of COVID-19) <a href="https://www.independentsage.org/wp-content/uploads/2021/10/Independent-SAGE-JCVI-statement_transparency_final.pdf">has raised a number of concerns about the JCVI’s decision-making process</a>. </p>
<p>One concern is the way in which the JCVI calculated the benefits of vaccination, basing these calculations on risk to the population of all children of death, hospitalization, ICU admission and so on from COVID-19 infection, rather than the risks of these to children with a confirmed infection of COVID-19.</p>
<p>Another concern Independent SAGE raised was that the JCVI did not state which vaccine it considered when it examined the risks, a relevant concern <a href="https://www.reuters.com/business/healthcare-pharmaceuticals/heart-inflammation-rates-higher-after-moderna-covid-19-shot-than-pfizer-vaccine-2021-10-01/">since heart inflammation rates appear to be higher after the Moderna vaccine than after the Pfizer</a> vaccine.</p>
<h2>Direct and indirect benefits</h2>
<p>Some of JVCI’s other mistakes related to value judgments, relying on the health perspective to make its decision. However, the JCVI was not consistent on what this included. </p>
<p>As noted, the JCVI mentioned the prevention of death, hospitalization, ICU admission and PIMS or MIS-C. These are not the only health benefits of vaccination against COVID-19. Some direct and indirect health benefits of vaccination were not clearly included.</p>
<p>The direct benefits include the prevention of <a href="https://www.who.int/publications/i/item/WHO-2019-nCoV-Post_COVID-19_condition-Clinical_case_definition-2021.1">long COVID</a> — a condition affecting anywhere <a href="https://www.thelancet.com/journals/lanchi/article/PIIS2352-4642(21)00198-X/fulltext">from two</a> <a href="https://www.reuters.com/business/healthcare-pharmaceuticals/english-study-finds-long-covid-affects-up-1-7-children-months-after-infection-2021-09-01/">to 14</a> per cent of children infected with COVID-19 — and potential neurological and cognitive deficits caused by COVID-19 infection. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/429418/original/file-20211029-21-1rwklhi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A group of adolescents near a schoolyard play structure" src="https://images.theconversation.com/files/429418/original/file-20211029-21-1rwklhi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/429418/original/file-20211029-21-1rwklhi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=422&fit=crop&dpr=1 600w, https://images.theconversation.com/files/429418/original/file-20211029-21-1rwklhi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=422&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/429418/original/file-20211029-21-1rwklhi.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=422&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/429418/original/file-20211029-21-1rwklhi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=530&fit=crop&dpr=1 754w, https://images.theconversation.com/files/429418/original/file-20211029-21-1rwklhi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=530&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/429418/original/file-20211029-21-1rwklhi.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=530&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Families and youth aged 12 and older line up for a COVID-19 vaccine at a Toronto school in May.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Nathan Denette</span></span>
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</figure>
<p>Preventing the <a href="https://doi.org/10.1136/bmj.n2052">negative mental and physical health effects</a> associated with school closures, limits on sporting and other such activities and physical distancing requirements are among the indirect benefits (though these were rightly noted by NACI in its recommendation to vaccinate adolescents). These health effects are important when deciding whether to vaccinate.</p>
<p>These are the known risks and benefits. However, the JCVI’s refusal to recommend vaccination to all children aged 12-15 was due to the uncertainties “regarding the magnitude of the potential harms” of vaccination, including myocarditis. </p>
<p>Although it gave considerable weight to unknown harms or uncertainties of vaccination, the JVCI did not consider potential unknown benefits of vaccination, or uncertainties about benefits. There was no reason to rule these out. Uncertainties about benefits seem to be of as much importance in thinking about the risk benefit profile of COVID-19 vaccination as uncertainties about risks. These, again, matter greatly to this decision.</p>
<p>The JCVI made another ethical error when it said the harms of vaccination should be given greater weight (relatively speaking) than the benefits. </p>
<p>There is no good reason to place a higher relative value on harms compared to benefits. Harms caused by vaccines are not worse than harms caused by COVID-19. It does not appear to be true that the rare and typically mild pericarditis or the myocarditis caused by vaccination is any worse than the pericarditis or the myocarditis caused (at <a href="https://www.newscientist.com/article/mg25133462-800-myocarditis-is-more-common-after-covid-19-infection-than-vaccination/">greater</a> <a href="https://www.nytimes.com/2021/10/06/health/covid-vaccine-children-dose.html?smid=tw-share">frequency</a>) by COVID-19 infection. This is not in line with other treatments considered for children, for which harms are not typically weighed more heavily than benefits.</p>
<h2>The well-being perspective</h2>
<p>It was a mistake for JCVI to make the decision about vaccination against COVID-19 in children purely on the basis of the health perspective. Health is important. But it is not the only value in the lives of children. Health is a priority because without it many other important benefits — enjoying friends, connecting with relatives, absorbing oneself in homework or music lessons — become much more difficult, if not impossible.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/429417/original/file-20211029-27-7g7pj5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A 12-year-old girl wearing a face mask with a sticker reading 'I got vaccinated'" src="https://images.theconversation.com/files/429417/original/file-20211029-27-7g7pj5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/429417/original/file-20211029-27-7g7pj5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/429417/original/file-20211029-27-7g7pj5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/429417/original/file-20211029-27-7g7pj5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/429417/original/file-20211029-27-7g7pj5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=565&fit=crop&dpr=1 754w, https://images.theconversation.com/files/429417/original/file-20211029-27-7g7pj5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=565&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/429417/original/file-20211029-27-7g7pj5.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"></a>
<figcaption>
<span class="caption">Sound ethics and sound science show that vaccinating children is, all things considered, beneficial.</span>
<span class="attribution"><span class="source">(AP Photo/Angie Wang)</span></span>
</figcaption>
</figure>
<p>The JCVI mentioned the beneficial effects of vaccination on education. But it did not factor these benefits into the decision relating to vaccinating children against COVID-19. </p>
<p>Educational and other benefits afforded to children by vaccination matter greatly and must be factored into this decision. Moving beyond the health perspective into the well-being perspective encompasses a larger range of benefits and protections from vaccination, including safe and stable learning environments, time with extended family, sport, music performances and the many other things that make life happy and meaningful for children.</p>
<p>When making the decision whether to vaccinate children aged five to 11 against COVID-19, regulators in Canada must rely on both sound science and sound ethics. They must in particular consider all the health and well-being impacts of vaccination more generally; they must consider the uncertain harms and benefits of vaccination; and they must treat benefits and harms symmetrically.</p>
<p>Doing so will show that vaccinating children is, all things considered, beneficial.</p>
<p><em>Do you have a question about COVID-19 vaccines? Email us at <a href="mailto:ca-vaccination@theconversation.com">ca-vaccination@theconversation.com</a> and vaccine experts will answer questions in upcoming articles.</em></p><img src="https://counter.theconversation.com/content/169820/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Anthony Skelton 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 making the decision whether to vaccinate children aged five to 11 against COVID-19, regulators in Canada must rely on sound ethics as well as sound science.Anthony Skelton, Associate Professor of Philosophy and Core Member of the Rotman Institute of Philosophy, Western UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1596532021-04-27T09:18:57Z2021-04-27T09:18:57ZEnd-of-life care: people should have the option of general anaesthesia as they die<figure><img src="https://images.theconversation.com/files/397119/original/file-20210426-17-suabjh.jpg?ixlib=rb-1.1.0&rect=0%2C19%2C6419%2C4295&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/man-holding-hand-giving-support-comfort-1576363936">KieferPix/Shutterstock</a></span></figcaption></figure><p>Dying patients who are in pain are <a href="https://pubmed.ncbi.nlm.nih.gov/12732169/">usually given an analgesic</a>, such as morphine, to ease their final hours and days. And if an analgesic isn’t enough, they <a href="https://pubmed.ncbi.nlm.nih.gov/18657380/">can be given a sedative</a> – something to make them more relaxed and less distressed at the end of life. We have recently <a href="https://associationofanaesthetists-publications.onlinelibrary.wiley.com/doi/10.1111/anae.15459">written about a third approach</a>: using a general anaesthetic to ensure that the dying patient is completely unconscious. This has been described previously, but largely overlooked.</p>
<p>There are two situations when a general anaesthetic might be used in dying patients. The first is when other drugs have not worked and the patient is still distressed or in pain. The second is when a patient has only a short time to live and expresses a clear wish to be unconscious. Some dying patients just want to sleep.</p>
<p>But what type of anaesthesia are we talking about? If you need surgery or a medical procedure, there are three options. First, being fully awake, but having local anaesthesia to block the pain. Second, you could be partly sedated: you would be less stressed or worried about it, but you might remember some of the procedure afterwards. Finally, you could have a general anaesthetic and be out cold, with no memory of the procedure afterwards.</p>
<p>Any of these might be appropriate, depending on the procedure and depending on the person. But the option with the highest chance that you won’t feel anything is, of course, general anaesthesia.</p>
<p>These same three options could be offered to a dying patient. Some people might want to be as awake as possible. (Like the poet Dylan Thomas, they might not wish to “<a href="https://poets.org/poem/do-not-go-gentle-good-night">go gentle into that good night</a>”.) Some might want to be sedated, if necessary. Others might want to be completely asleep.</p>
<p>The choice of general anaesthesia at the end of life is potentially popular. Last year, we <a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0247193">surveyed more than 500 people</a> in the UK about end-of-life options. Nearly 90% said they would like the option of a general anaesthetic if they were dying. </p>
<p>You might wonder, is this not just euthanasia by another name? Giving someone medicines to ensure that they are unconscious as they die naturally is different from giving someone medicine to end their life. General anaesthesia is legal, whereas in many countries, including the UK, <a href="https://www.nhs.uk/conditions/euthanasia-and-assisted-suicide/">euthanasia is illegal</a>.
This means that the option of anaesthesia could be available now for dying patients in the UK without changing the law. France has recently recognised <a href="https://jme.bmj.com/content/44/3/204">the right for dying patients to be unconscious</a>.</p>
<h2>Wouldn’t it be too risky?</h2>
<p>There are side-effects with all medicines, but <a href="https://associationofanaesthetists-publications.onlinelibrary.wiley.com/doi/10.1111/anae.15459">recent advances</a> mean that it is possible to give anaesthetic medicines to patients close to death without affecting their breathing. The medicine is given slowly, and the patient made unconscious gradually over 15 to 20 minutes. The medicine can be slowed or stopped at any point.</p>
<p><a href="https://pubmed.ncbi.nlm.nih.gov/16376744/">Previous studies</a> that have used anaesthesia at the end of life, have continued the medicines for one to 14 days until the patient died naturally.</p>
<p>This will not be for everyone. It may not be possible for those who are dying in their own home. And some people will not want it. But we have the means to offer dying patients a gentle alternative end to their days. We believe that there is a strong ethical case to make the option of general anaesthesia at the end of life more widely available.</p><img src="https://counter.theconversation.com/content/159653/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Dominic Wilkinson receives funding from the Wellcome Trust and the Arts and Humanities Research Council (AHRC) as part of the UK Research and Innovation rapid response to Covid-19: AH/V013947/1. The funders had no role in the preparation of this manuscript. </span></em></p><p class="fine-print"><em><span>Julian Savulescu receives funding from the Wellcome Trust, the Uehiro Foundation on Ethics and Education and the Arts and Humanities Research Council (AHRC) as part of the UK Research and Innovation rapid response to Covid-19: AH/V013947/1. The funders had no role in the preparation of this manuscript. </span></em></p>The case for letting people go gentle into that good night.Dominic Wilkinson, Consultant Neonatologist and Professor of Ethics, University of OxfordJulian 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 OxfordLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1563432021-04-12T19:18:47Z2021-04-12T19:18:47ZWe’re creating ‘humanized pigs’ in our ultraclean lab to study human illnesses and treatments<figure><img src="https://images.theconversation.com/files/391780/original/file-20210325-17-nc2rjy.jpg?ixlib=rb-1.1.0&rect=12%2C6%2C3482%2C1792&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Pigs with human immune systems.</span> <span class="attribution"><span class="source">Ahlea Forster</span>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span></figcaption></figure><p>The U.S. Food and Drug Administration <a href="https://www.federalregister.gov/documents/2002/05/31/02-13583/new-drug-and-biological-drug-products-evidence-needed-to-demonstrate-effectiveness-of-new-drugs-when">requires all new medicines to be tested in animals</a> before use in people. Pigs make better medical research subjects than mice, because they are closer to humans in size, <a href="https://doi.org/10.1016/j.tim.2011.11.002">physiology</a> and <a href="https://doi.org/10.1186/1471-2164-14-332">genetic makeup</a>. </p>
<p>In recent years, <a href="https://faculty.sites.iastate.edu/cktuggle/">our team at Iowa State University</a> has found a way to make pigs an even closer stand-in for humans. We have successfully transferred components of the <a href="https://doi.org/10.3389/fimmu.2020.00100">human immune system into pigs that lack a functional immune system</a>. This breakthrough has the potential to accelerate medical research in many areas, including <a href="https://doi.org/10.1159/000451007">virus</a> and vaccine research, as well as <a href="https://doi.org/10.3389/fonc.2019.00009">cancer</a> and <a href="https://orip.nih.gov/about-orip/research-highlights/severe-combined-immunodeficient-pigs-promising-model-human-stem-cell">stem cell therapeutics</a>. </p>
<h2>Existing biomedical models</h2>
<p>Severe Combined Immunodeficiency, or SCID, is a genetic condition that causes impaired development of the immune system. People can develop SCID, <a href="https://www.cbsnews.com/pictures/bubble-boy-40-years-later-look-back-at-heartbreaking-case/15/">as dramatized in the 1976 movie</a> “<a href="https://wikimili.com/en/The_Boy_in_the_Plastic_Bubble">The Boy in the Plastic Bubble</a>.” Other animals can develop SCID, too, including mice.</p>
<p>Researchers in the 1980s <a href="https://doi.org/10.1126/science.2971269">recognized that SCID mice</a> <a href="https://doi.org/10.1038/335256a0">could be implanted with human immune cells</a> for further study. Such mice are called “humanized” mice and have been optimized over the <a href="https://doi.org/10.1038/cmi.2012.2">past 30 years</a> to study many questions relevant to human health. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/391791/original/file-20210325-17-1vwceuc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A rack of clear enclosures containing mice in a laboratory setting." src="https://images.theconversation.com/files/391791/original/file-20210325-17-1vwceuc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/391791/original/file-20210325-17-1vwceuc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=377&fit=crop&dpr=1 600w, https://images.theconversation.com/files/391791/original/file-20210325-17-1vwceuc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=377&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/391791/original/file-20210325-17-1vwceuc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=377&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/391791/original/file-20210325-17-1vwceuc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=474&fit=crop&dpr=1 754w, https://images.theconversation.com/files/391791/original/file-20210325-17-1vwceuc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=474&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/391791/original/file-20210325-17-1vwceuc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=474&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Mice are valuable models, but they have limitations.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/experimenal-mice-are-raised-in-the-ivc-cages-royalty-free-image/639071964">unoL/iStock via Getty Images</a></span>
</figcaption>
</figure>
<p>Mice are the most <a href="https://doi.org/10.4103/0975-7406.124301">commonly used animal in biomedical research</a>, but results from <a href="https://sitn.hms.harvard.edu/flash/2020/why-drugs-tested-in-mice-fail-in-human-clinical-trials/">mice often do not translate well to human responses</a>, thanks to <a href="https://doi.org/10.1016/j.ejps.2013.08.018">differences in metabolism</a>, size and <a href="https://doi.org/10.1038/s41586-019-1506-7">divergent cell functions</a> compared with people. </p>
<p>Nonhuman primates are also used for medical research and are certainly closer stand-ins for humans. But using them for this purpose raises <a href="https://doi.org/10.1163/25889567-BJA10002">numerous ethical considerations</a>. With these concerns in mind, the National Institutes of Health <a href="https://www.nature.com/news/nih-to-retire-all-research-chimpanzees-1.18817">retired most of its chimpanzees from biomedical research</a> in 2013. </p>
<p>Alternative animal models are in demand.</p>
<p>Swine are a viable option for medical research because of their similarities to humans. And with their widespread commercial use, pigs are met with fewer ethical dilemmas than primates. Upwards of <a href="https://www.nass.usda.gov/Charts_and_Maps/Livestock_Slaughter/hgheadx3.php">100 million hogs</a> are slaughtered each year for food in the U.S.</p>
<h2>Humanizing pigs</h2>
<p>In 2012, groups at Iowa State University and Kansas State University, including Jack Dekkers, <a href="https://scholar.google.com/citations?hl=en&user=eEspUMQAAAAJ">an expert in animal breeding and genetics</a>, and Raymond Rowland, <a href="https://pubmed.ncbi.nlm.nih.gov/?term=%22Raymond+Rowland%22">a specialist in animal diseases</a>, <a href="https://www.cals.iastate.edu/news/releases/iowa-state-university-seeks-develop-pig-benefit-human-medical-therapies">serendipitously discovered</a> a naturally occurring genetic mutation in pigs that caused SCID. We wondered if we could develop these pigs to create a new biomedical model. </p>
<p>Our group has worked for nearly a decade developing and optimizing SCID pigs for applications in biomedical research. In 2018, we achieved a <a href="https://doi.org/10.3389/fimmu.2020.00100">twofold milestone</a> when working with animal physiologist <a href="https://scholar.google.com/citations?user=iAJav9YAAAAJ&hl=en">Jason Ross</a> and his lab. Together we developed a <a href="https://www.news.iastate.edu/news/2020/05/28/scidpigs2020grant">more immunocompromised pig than the original SCID pig – and successfully humanized it</a>, by transferring cultured human immune stem cells into the livers of developing piglets. </p>
<p>During early fetal development, immune cells develop within the liver, providing an opportunity to introduce human cells. We inject human immune stem cells into fetal pig livers <a href="https://doi.org/10.30802/AALAS-CM-18-000098">using ultrasound imaging as a guide</a>. As the pig fetus develops, the injected human immune stem cells begin to differentiate – or change into other kinds of cells – and spread through the pig’s body. Once SCID piglets are born, we can detect human immune cells in their blood, liver, spleen and thymus gland. This humanization is what makes them so valuable for testing new medical treatments.</p>
<p>We have found that human ovarian tumors <a href="https://doi.org/10.3389/fonc.2019.00009">survive and grow in SCID pigs</a>, giving us an opportunity to study ovarian cancer in a new way. Similarly, because <a href="https://doi.org/10.1111/wrr.12715">human skin survives on SCID pigs</a>, scientists may be able to develop new treatments for skin burns. Other research possibilities are numerous.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/388146/original/file-20210306-13-14k76rq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="An indoor space housing pigs, with specialize air vents and plastic sheeting." src="https://images.theconversation.com/files/388146/original/file-20210306-13-14k76rq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/388146/original/file-20210306-13-14k76rq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=173&fit=crop&dpr=1 600w, https://images.theconversation.com/files/388146/original/file-20210306-13-14k76rq.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=173&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/388146/original/file-20210306-13-14k76rq.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=173&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/388146/original/file-20210306-13-14k76rq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=217&fit=crop&dpr=1 754w, https://images.theconversation.com/files/388146/original/file-20210306-13-14k76rq.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=217&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/388146/original/file-20210306-13-14k76rq.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=217&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">The ultraclean SCID pig biocontainment facility in Ames, Iowa.</span>
<span class="attribution"><span class="source">Adeline Boettcher</span>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span>
</figcaption>
</figure>
<h2>Pigs in a bubble</h2>
<p>Since our pigs lack essential components of their immune system, they are extremely susceptible to infection and require special housing to help reduce exposure to pathogens. </p>
<p>SCID pigs are <a href="https://doi.org/10.1177/0023677217750691">raised in bubble biocontainment facilities</a>. Positive pressure rooms, which maintain a higher air pressure than the surrounding environment to keep pathogens out, are coupled with highly filtered air and water. All personnel are required to wear full personal protective equipment. We typically have anywhere from two to 15 SCID pigs and breeding animals at a given time. (Our breeding animals do not have SCID, but they are genetic carriers of the mutation, so their offspring may have SCID.) </p>
<p>[<em>Deep knowledge, daily.</em> <a href="https://theconversation.com/us/newsletters/the-daily-3?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=deepknowledge">Sign up for The Conversation’s newsletter</a>.]</p>
<p>As with any animal research, ethical considerations are always front and center. All our protocols are approved by Iowa State University’s Institutional Animal Care and Use Committee and are in accordance with <a href="https://grants.nih.gov/grants/olaw/guide-for-the-care-and-use-of-laboratory-animals.pdf">The National Institutes of Health’s Guide for the Care and Use of Laboratory Animals</a>. </p>
<p>Every day, twice a day, our pigs are checked by expert caretakers who monitor their health status and provide engagement. We have veterinarians on call. If any pigs fall ill, and drug or antibiotic intervention does not improve their condition, the animals are humanely euthanized. </p>
<p>Our goal is to continue optimizing our humanized SCID pigs so they can be more readily available for stem cell therapy testing, as well as research in other areas, including cancer. We hope the development of the SCID pig model will pave the way for advancements in therapeutic testing, with the long-term goal of improving human patient outcomes.</p>
<p><em>Adeline Boettcher earned her research-based Ph.D. working on the SCID project in 2019.</em></p><img src="https://counter.theconversation.com/content/156343/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Christopher Tuggle receives funding from the US National Institutes of Health to develop the SCID pig model. The Artemis SCID pig model has been patented by Iowa State University (#9,745,561) and can be licensed for use.</span></em></p><p class="fine-print"><em><span>Adeline Boettcher 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>Medical research to benefit people is first conducted in animals. Creating a new biomedical model by inserting human immune cells into pigs may lead to new insights and treatments.Christopher Tuggle, Professor of Animal Science, Iowa State UniversityAdeline Boettcher, Technical Writer II, Iowa State UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1574402021-03-19T13:37:09Z2021-03-19T13:37:09ZHalting vaccine rollout: is allowing harm worse than doing harm?<p>The UK and EU were recently engaged in a heated disagreement over the safety of the <a href="https://www.sciencemag.org/news/2021/03/it-s-very-special-picture-why-vaccine-safety-experts-put-brakes-astrazeneca-s-covid-19">AstraZeneca vaccine</a>. Germany, France and other EU states halted the AstraZeneca vaccine rollout while the European Medicines Agency (EMA) investigated the possibility that the vaccine might cause a rare, sometimes fatal, <a href="https://www.sciencemag.org/news/2021/03/it-s-very-special-picture-why-vaccine-safety-experts-put-brakes-astrazeneca-s-covid-19">blood clot</a> called <a href="https://www.hopkinsmedicine.org/health/conditions-and-diseases/cerebral-venous-sinus-thrombosis#:%7E:text=Key%20points,of%20your%20body%2C%20and%20seizures.">cerebral venous sinus thrombosis</a> (CVST). </p>
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<p><em>Listen to an audio version of this story here.</em></p>
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<p>In the latest announcement, the EMA says that no causal link between the AstraZeneca vaccine and CVST <a href="https://www.ema.europa.eu/en/news/covid-19-vaccine-astrazeneca-benefits-still-outweigh-risks-despite-possible-link-rare-blood-clots">has been proved</a>. Their report admits that there is still a possible link to the rare blood clots, which deserves further analysis, but in the absence of proven causality rollout should continue. And, indeed, Germany, France, Italy, Spain and other European countries have said that they will <a href="https://news.sky.com/story/italy-latvia-and-lithuania-to-resume-rollout-of-oxford-astrazeneca-jab-after-regulator-says-its-safe-12249988">resume the AstraZeneca vaccine rollout</a>. </p>
<p>Some commentators framed the disagreement between the UK and EU as reflecting bad blood and division over <a href="https://www.thesun.co.uk/news/14357073/italy-france-ban-astrazeneca-vaccine-covid-resume/">Brexit</a>. Others stressed disputes over how to interpret <a href="https://www.theguardian.com/commentisfree/2021/mar/15/evidence-oxford-vaccine-blood-clots-data-causal-links">statistical patterns</a>. Underlying these disagreements, though, was a remarkable agreement. Both UK and EU commentators seemed to agree that if the vaccine causes clots, we should stop using it. They disagreed over whether we have evidence the vaccine causes clots, not over how we should respond if it does.</p>
<p>The claim that if the vaccine causes deadly blood clots, then we must stop using it may be compelling to many, but it is also tricky because stopping the vaccine rollout has costs. We have excellent evidence that the AstraZeneca vaccine is effective at stopping <a href="https://www.theguardian.com/theobserver/commentisfree/2021/feb/28/both-covid-jabs-are-working-well-in-the-real-world-not-just-the-lab">symptoms and probably transmission</a>. So stopping using the vaccine is equivalent to letting many people unnecessarily contract COVID-19, with potentially fatal consequences for them or others. </p>
<h2>First, do no harm</h2>
<p>Even if the vaccine has fatal side-effects in a few cases, vaccinating the population might save many more lives than it costs. So why the apparent agreement that if the vaccine has fatal side-effects, we should halt the rollout?</p>
<p>A core principle of medical ethics is “<a href="https://www.academia.edu/44711775/_First_do_no_harm_Non_maleficence_population_health_and_the_ethics_of_risk">first, do no harm</a>”. This can seem a peculiar principle – of course we don’t want doctors going around harming patients. It gets some bite if we spell it out more fully: “Do no harm, even if doing harm would lead to more benefit.”</p>
<p>Consider this deliberately grotesque example lecturers often use to make this point more vivid to bored students: a doctor could remove a heart and lungs from a healthy patient and use the heart to save one patient, the lungs to save another. The net result of this operation would be “positive”: two lives saved for one life lost. Still, it seems obvious that the doctor shouldn’t go around cutting open healthy patients, regardless of this “net benefit”. “First, do no harm” captures that thought. </p>
<figure class="align-right ">
<img alt="Hippocrates." src="https://images.theconversation.com/files/390627/original/file-20210319-13-1s3nsie.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/390627/original/file-20210319-13-1s3nsie.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=882&fit=crop&dpr=1 600w, https://images.theconversation.com/files/390627/original/file-20210319-13-1s3nsie.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=882&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/390627/original/file-20210319-13-1s3nsie.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=882&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/390627/original/file-20210319-13-1s3nsie.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1108&fit=crop&dpr=1 754w, https://images.theconversation.com/files/390627/original/file-20210319-13-1s3nsie.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1108&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/390627/original/file-20210319-13-1s3nsie.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1108&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">‘First, do no harm is attributed to the ancient Greek physician, Hippocrates.</span>
<span class="attribution"><a class="source" href="https://commons.wikimedia.org/w/index.php?curid=164808">Wikimedia Commons</a></span>
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<p>Underlying this “do no harm” principle is a <a href="https://plato.stanford.edu/entries/doing-allowing/">deeper claim</a> that it is worse to do harm than to allow harm to happen. In the grotesque example, it is worse to kill someone than it is to let two people avoidably die from lack of an organ transplant. Or, in the real world case of the COVID jab, it is worse to cause some to suffer a blood clot than to let very many people die from lack of a vaccine. </p>
<p>Again, this distinction between what we “do” and what we “allow” can seem intuitive in some cases, such as killing one person to give her organs to others. But it is contested – and for lots of good reasons.</p>
<p>First, some have argued that drawing a strong distinction between doing and allowing doesn’t reflect some fundamental ethical difference, but is more like a psychological quirk of humans, grounded in a desire to <a href="https://link.springer.com/chapter/10.1007/978-1-4615-6561-1_33">avoid blame</a>. Maybe we should just bite the bullet and accept that sometimes we have to get our hands dirty.</p>
<p>Second, the dividing line between doing and allowing is itself blurry. Think about another COVID case, lockdown policies. A feature of lockdown was that vulnerable women were trapped with violent partners, <a href="https://www.bbc.co.uk/news/uk-england-bristol-56032316">sometimes with tragic consequences</a>. These consequences were predictable. In implementing lockdown, did the government “cause” these harms, or merely “allow” them to happen? </p>
<p>Of course, there is debate over all of these issues. Some think we can distinguish “doing” and “allowing” and that this distinction is ethically important. What is clear, though, is that debates about vaccine safety go beyond scientific debates about when we can infer claims about cause and effect. Rather, these debates are grounded in ethical assumptions that we can, and should, question and contest.</p><img src="https://counter.theconversation.com/content/157440/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Stephen John receives funding from the British Academy for a project on Rethinking the Ethics of Vaccination.</span></em></p>Underlying medicines ‘do no harm’ principle is a deeper claim that it is worse to do harm than to allow harm to happen.Stephen John, Senior Lecturer in Philosophy of Public Health, University of CambridgeLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1442402020-08-17T12:24:24Z2020-08-17T12:24:24ZThe ethical case for allowing medical trials that deliberately infect humans with COVID-19<figure><img src="https://images.theconversation.com/files/353054/original/file-20200816-14-oc0umk.jpg?ixlib=rb-1.1.0&rect=6%2C0%2C2233%2C1491&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Could intentionally infecting volunteers in COVID-19 trials speed up a vaccine?</span> <span class="attribution"><a class="source" href="http://www.apimages.com/metadata/Index/Virus-Outbreak-Vaccine-Study/92a3ec84082449ab8cd8c52ae3aa86dd/102/0">AP Photo/Ted S. Warren</a></span></figcaption></figure><p>Despite the urgent need to beat COVID-19, health officials may be delaying the development of an effective vaccine.</p>
<p>Authorities in the U.S. and elsewhere are yet to authorize an ethically charged research procedure called “<a href="https://www.sciencemag.org/news/2020/07/controversial-human-challenge-trials-covid-19-vaccines-gain-support">human challenge trials</a>.” Challenge trials entail deliberately infecting volunteers with the disease – which explains the official reticence – but they could substantially expedite the development of a vaccine.</p>
<p>The debate over human challenge trials has been <a href="https://www.tandfonline.com/doi/full/10.1080/15265161.2020.1779393">raging for months</a> among health professionals and academics. But only now – some eight months into the pandemic – are <a href="https://www.washingtonpost.com/health/2020/08/14/us-will-prepare-coronavirus-strain-potential-human-challenge-trials/">authorities in the U.S. beginning to consider</a> them in a bid to speed up the vaccine-development process.</p>
<h2>Sitting and waiting</h2>
<p>A vaccine has to <a href="https://www.cdc.gov/vaccines/basics/test-approve.html">go through multiple stages</a> before it can be rolled out. After establishing its ability to trigger an immune response and its safety, developers must test it for efficacy. Inefficient vaccines may not justify the tiny risk inherent even in safe vaccines, may be enormously wasteful, may divert resources from better alternatives and may harm immunization rates.</p>
<p>There are two principal ways with which to measure efficacy. Under the conventional method, researchers vaccinate tens of thousands of volunteers and then passively wait for some of them to get infected. The frequency of infection is then compared to a non-vaccinated control group.</p>
<p>In the second method, human challenge trials, a much smaller group of volunteers is intentionally infected after receiving the experimental vaccine or a placebo. This allows for a much faster and efficient determination of vaccine efficacy.</p>
<p>To date, <a href="https://1daysooner.org/">more than 33,000 people from 151 countries</a> have volunteered to be part of such a procedure. But there is no official authorization for human challenge trials for COVID-19 in the U.S. or other Western countries. This means that vaccine developers are forced to vaccinate many more volunteers – <a href="https://www.nytimes.com/interactive/2020/science/coronavirus-vaccine-tracker.html">typically about 30,000 are involved</a> for each candidate vaccine – and then release them into the general population, with the hope that enough data would soon accumulate.</p>
<p>This is <a href="https://www.nytimes.com/interactive/2020/science/coronavirus-vaccine-tracker.html">where we presently are in the U.S.</a>: waiting for enough participating volunteers to catch the virus by happenstance. </p>
<p>Paradoxically, these giant and expensive studies – American taxpayers have already spent <a href="https://www.usatoday.com/story/news/health/2020/08/08/feds-spending-more-than-9-billion-covid-19-vaccine-candidates/5575206002/">billions of dollars on vaccine development</a> – are slowed down by government efforts to minimize infection rates through quarantines, closures, masks usage or social distancing. Back in May, leading developers of potential COVID-19 vaccines, including the biotechnology company Moderna and Oxford University, <a href="https://www.washingtonpost.com/world/europe/coronavirus-vaccine-trials-astrazeneca-moderna/2020/06/09/48f28fea-a414-11ea-898e-b21b9a83f792_story.html?outputType=amp">issued a warning</a> that low-level infections among their volunteers may delay the development of their vaccines.</p>
<p>It is possible, of course, that the conventional studies will <a href="https://www.nih.gov/news-events/news-releases/phase-3-clinical-trial-investigational-vaccine-covid-19-begins">yield the required data</a>. But there is a distinct possibility that challenge trials could speed up things. </p>
<h2>Medical ethics</h2>
<p>Opposition to human challenge studies for COVID-19 is based, first and foremost, <a href="https://www.statnews.com/2020/06/23/challenge-trials-live-coronavirus-speedy-covid-19-vaccine/">on ethical considerations</a>. Since at present there is no cure for COVID-19, intentional infection can result in death or serious impairments. It is therefore <a href="https://www.statnews.com/2020/06/23/challenge-trials-live-coronavirus-speedy-covid-19-vaccine/">argued by people like Michael Rosenblatt</a>, a former dean of Tufts University School of Medicine and a present adviser to Moderna, that the risks are too high, and that volunteers cannot give a valid “informed consent” for intentional infection.</p>
<p>The argument that willing adults cannot consent to risking their health for the greater good is, we believe, inconsistent with how society views other acts of volunteerism. Volunteer firefighters, for example, also face unknown dangers. Moreover, few countries refrain from risking the health and lives of their young citizens on the world’s battlefields, if they deem that the common good requires such sacrifice. And while COVID-19 human challenge trials would include only volunteers, most battlefields also include people who are forced into service.</p>
<p>Delaying a vaccine may also endanger volunteering health care workers. Current estimates put the number of U.S. health care workers’ deaths from COVID-19 <a href="https://www.theguardian.com/us-news/ng-interactive/2020/aug/11/lost-on-the-frontline-covid-19-coronavirus-us-healthcare-workers-deaths-database">at around 1,000</a>. Health care volunteers continue risking their lives as long as vaccine development is delayed.</p>
<p>The opposition to human challenge trials derives from justified sensitivity to medical experiments on humans, and the horrific history of such experiments – which often ignored the interests and rights of their subjects. These included <a href="https://www.nytimes.com/2020/01/28/books/review/mengele-david-g-marwell.html">the experiments performed by the Nazis</a> on prisoners or the <a href="https://www.cdc.gov/tuskegee/timeline.htm">notorious Tuskegee Study</a> of untreated syphilis, which was conducted on unsuspecting African Americans. And of course, even medical experiments that subjects consent to <a href="https://www.bbc.com/news/magazine-35766627">can go terribly wrong</a>. </p>
<h2>Lives at stake</h2>
<p>But rapid development of an effective vaccine could save hundreds of thousands of lives worldwide. At present, more than <a href="https://www.who.int/docs/default-source/coronaviruse/situation-reports/20200814-covid-19-sitrep-207.pdf?sfvrsn=2f2154e6_2">5,000 people die of COVID-19 each day</a>. At that rate, every month of delay in vaccine availability costs 150,000 lives. </p>
<p>The indirect costs are tremendous as well. For example, the United Nations recently announced that pandemic-linked hunger is tied to <a href="https://apnews.com/5cbee9693c52728a3808f4e7b4965cbd">10,000 child deaths each month</a>. From these perspectives, the arguments against human challenge trials appear far less convincing.</p>
<p>[<em>Deep knowledge, daily.</em> <a href="https://theconversation.com/us/newsletters/the-daily-3?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=deepknowledge">Sign up for The Conversation’s newsletter</a>.]</p>
<p>We believe that the decision to allow human challenge trials for COVID-19 should not be examined solely through the narrow lens of medical ethics – with its cardinal principal of doing no harm to the individual patient or the volunteer. The COVID-19 epidemic is a global disaster, and decisions concerning it should be made with the wider perspectives of public health and general morality. In other words, the decision may be more suitable for high level policymakers than for medical ethics committees.</p>
<p>In April, <a href="https://www.sciencemag.org/news/2020/04/united-states-should-allow-volunteers-be-infected-coronavirus-test-vaccines-lawmakers">some American lawmakers did weigh in</a>: 35 members of the U.S. House of Representatives sent a letter to the heads of the U.S. Food and Drug Administration and the Department of Health and Human Services, voicing support for human challenge trials. So far, however, this effort has had no effect.</p>
<p>There is no doubt that human challenge trials carry significant risks for volunteers; but they also carry the chance of significant benefits for humanity. Instead of regarding these volunteers as uninformed, society may do better to valorize their altruism and heroism. We believe that, given present circumstances, human challenge trials for COVID-19 are not morally wrong: To the contrary, they express humanity’s most noble values.</p><img src="https://counter.theconversation.com/content/144240/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>Conventional trials to test coronavirus vaccines are paradoxically slowed down by actions to curb the disease’s spread. Human challenge trials are more controversial, but could speed up the process.Ofer Raban, Professor of Constitutional Law, University of OregonYuval Dor, Professor of Biology, Hebrew University of JerusalemLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1346282020-03-31T13:48:17Z2020-03-31T13:48:17ZCoronavirus and triage: a medical ethicist on how hospitals make difficult decisions<figure><img src="https://images.theconversation.com/files/324315/original/file-20200331-65533-sdjsbr.jpg?ixlib=rb-1.1.0&rect=73%2C58%2C4820%2C3198&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/surgeons-interacting-each-other-operation-room-584313532">Syda Syda Productions/Shutterstock</a></span></figcaption></figure><p>All healthcare resources are limited – staff, equipment, drugs, space and time can all run out. And these resources become even scarcer in cases of unprecedented demand, such as with <a href="https://theconversation.com/coronavirus-vaccine-here-are-the-steps-it-will-need-to-go-through-during-development-134726">COVID-19</a>. </p>
<p>Decisions about the use and allocation of scarce resources are regularly made in medicine. These include the allocation of donor organs for transplant, A&E triage and surgery waiting lists. These usually proceed on the basis of those with the greatest medical need being given priority.</p>
<p>But the way these allocation decisions are made in <a href="https://theconversation.com/four-graphs-that-show-how-the-coronavirus-pandemic-could-now-unfold-133979">crisis situations</a> differs. This is because medical need is no longer adequate as a basis by itself – as there are more people in urgent need than resources available to help them. </p>
<p>Access to <a href="https://www.theguardian.com/world/2020/mar/27/how-ventilators-work-and-why-they-are-so-important-in-saving-people-with-coronavirus">ventilators</a>, for example, is likely to be one of the <a href="https://www.nejm.org/doi/full/10.1056/NEJMp2005689">most challenging resources to allocate</a> – this may mean patients <a href="https://metro.co.uk/2020/03/27/chilling-letter-reveals-hospitals-plan-comfort-dying-coronavirus-patients-ventilators-run-12467109/">dying without ventilation</a>. </p>
<h2>The ethical dilemma</h2>
<p>Decisions on <a href="https://www.telegraph.co.uk/news/2020/03/29/intensive-care-coronavirus-patients-now-limited-reasonably-certain/">how to allocate such limited resources</a> are made in the full knowledge that hospital staff must prioritise some people over others – and that <a href="https://theconversation.com/coronavirus-how-the-current-number-of-people-dying-in-the-uk-compares-to-the-past-decade-134420">not all lives will be saved</a>. </p>
<p>Making such <a href="https://theconversation.com/coronavirus-how-ai-3d-printing-and-blockchain-can-help-overcome-supply-problems-in-a-crisis-133826">decisions</a> is a deeply demanding task on healthcare staff. And when it comes to life and death prioritisation, to be justifiable, these decisions must be made from a clear ethical basis. This means hospitals must consider how they can <a href="https://www.cambridge.org/core/books/just-health/1322AC95E8FEA51A978F200200A103A4">distribute the resources they have fairly</a>. </p>
<p>There are different ways of determining what is a “fair” means of allocation. Healthcare workers already have as a guiding principle “to each according to their need”. Alternatively, they might employ: “to each according to merit” – and consider a person’s social contribution. Or use a “random lottery” – as a form of equalising chances. There could also be the approach of “helping the worst off first”, or a different school of thought: “to each according to the prospect of success”. </p>
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Read more:
<a href="https://theconversation.com/what-will-the-world-be-like-after-coronavirus-four-possible-futures-134085">What will the world be like after coronavirus? Four possible futures</a>
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<p>It is the last of these, known as “outcome maximisation”, that is often appealed to in crisis situations. This endorses a <a href="http://www.bbc.co.uk/ethics/introduction/consequentialism_1.shtml">consequentialist moral view</a> that the right thing to do is to produce the greatest good for the greatest number. </p>
<p>The most basic interpretation of what this “good” is in healthcare would see resources allocated in a way that results in the greatest amount of people saved. </p>
<h2>The problems</h2>
<p>This seems a simple and intuitive basic good that many people would agree upon. But this approach also has multiple problems in terms of interpretation. For example, it might be interpreted as simply the number of people saved or it might be interpreted as the greatest number of years of life saved. And if maximising the number of <a href="https://theconversation.com/how-health-professionals-need-to-discuss-end-of-life-situations-during-coronavirus-and-beyond-133196">people whose lives are saved</a> is the overarching ethical goal, <a href="https://theconversation.com/not-perfect-but-positive-the-uk-response-to-coronavirus-134824">governments and medical staff</a> need to establish how this is best achieved. </p>
<p>This would mean for COVID-19 that <a href="https://theconversation.com/coronavirus-why-we-need-to-consult-engineers-as-well-as-scientists-for-solutions-134460">lifesaving ventilation</a> is offered on a basis of prioritising those who will be most likely to survive as a result of the intervention. This may also be combined with the likely speed of their recovery – as this would free up ventilators for others sooner. This combination reflects the ethical goal by offering the highest probability that the greatest number of lives will be saved overall.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/324276/original/file-20200331-65518-1onbetu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/324276/original/file-20200331-65518-1onbetu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/324276/original/file-20200331-65518-1onbetu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/324276/original/file-20200331-65518-1onbetu.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/324276/original/file-20200331-65518-1onbetu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/324276/original/file-20200331-65518-1onbetu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/324276/original/file-20200331-65518-1onbetu.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">Difficult decisions are being made on a daily basis by medical staff around the world.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/global-spread-novel-coronavirus-pneumatia-medical-1665409711">InkheartX/Shutterstock</a></span>
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<p>But in high-pressure situations, any such approach will likely be simplistic – such as an algorithm based on the age of the patient and any health conditions. This could lead to disadvantaged groups being systematically discriminated against. The elderly and those with underlying health conditions, for example, could be deprioritised because they will be less likely to survive or take longer to recover. Even if additional considerations are added to the process – such as the potential quality of life or subsequent length of a person’s life – these groups are likely to fair badly. </p>
<p>Strict adherence to the overarching moral goal of maximising lives saved might also require aspects of positive discrimination. If, for example, the patient is a highly skilled, older medic, then prioritising them might result in more lives overall being saved. While this may be reassuring for key workers, the danger is that it adds in a difficult moral evaluation as to the nature of everyone’s role in society. </p>
<h2>Fair process</h2>
<p>Trying to maximise lives saved will inevitably be contentious and imperfect. But it’s still ethically justifiable to appeal to a clear and overarching moral goal through which all allocation decisions are filtered. </p>
<p>But <a href="https://link.springer.com/chapter/10.1007/978-3-319-23847-0_3">other conditions</a> also need to be satisfied to ensure the process of making these decisions was as clear, fair and universal as the underlying moral goal. This means that both government and healthcare workers need to be open, public and clear about the basis of selective prioritisation. It also needs to be made clear that criteria will be revisable as information and situations change. Such an approach would also need to be systematically enforced – so that universal and applied to all.</p>
<p>Without such clarity and fairness, confidence, trust, solidarity and support for health systems would become irreparably damaged in the <a href="https://www.nuffieldbioethics.org/assets/pdfs/Ethical-considerations-in-responding-to-the-COVID-19-pandemic.pdf">longer term</a>.</p>
<p>This is the challenge medical staff must face in the coming weeks and months – many of whom will be making difficult decisions on a daily basis while trying to save as many lives as possible.</p><img src="https://counter.theconversation.com/content/134628/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Anthony Wrigley receives funding from Keele University</span></em></p>Trying to maximise lives saved will inevitably be contentious and imperfect.Anthony Wrigley, Professor of Ethics, Keele UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1290682020-01-15T19:08:18Z2020-01-15T19:08:18ZDon’t die wondering: apps may soon be able to predict your life expectancy, but do you want to know?<figure><img src="https://images.theconversation.com/files/310160/original/file-20200115-151844-1ole8rh.jpg?ixlib=rb-1.1.0&rect=46%2C23%2C3833%2C2681&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Monaco and Japan have some of the highest life expectancies in the world. But calculating an individual's life expectancy will require taking data analysis several steps further.</span> <span class="attribution"><span class="source">SHUTTERSTOCK</span></span></figcaption></figure><p><em>When will I die?</em></p>
<p>This question has endured across cultures and civilisations. It has given rise to a plethora of religions and spiritual paths over thousands of years, and more recently, <a href="https://apps.apple.com/us/app/when-will-i-die/id1236569653">some highly amusing apps</a>. </p>
<p>But this question now prompts a different response, as technology slowly brings us closer to accurately predicting the answer. </p>
<p>Predicting the lifespan of people, or their “Personal Life Expectancy” (PLE) would greatly alter our lives. </p>
<p>On one hand, it may have benefits for policy making, and help optimise an individual’s health, or the services they receive. </p>
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Read more:
<a href="https://theconversation.com/were-not-just-living-for-longer-were-staying-healthier-for-longer-too-118588">We're not just living for longer – we're staying healthier for longer, too</a>
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<p>But the potential misuse of this information by the government or private sector poses major risks to our rights and privacy.</p>
<p>Although generating an accurate life expectancy is currently difficult, due to the complexity of factors underpinning lifespan, emerging technologies could make this a reality in the future.</p>
<h2>How do you calculate life expectancy?</h2>
<p>Predicting life expectancy is not a new concept. <a href="http://www.bbc.com/travel/story/20170807-living-in-places-where-people-live-the-longest">Experts do this</a> at a population level by classifying people into groups, often based on region or ethnicity. </p>
<p>Also, tools such as <a href="https://www.nature.com/articles/s41598-018-23534-9">deep learning</a> and <a href="https://mipt.ru/english/news/scientists_use_ai_to_predict_biological_age_based_on_smartphone_and_wearables_data">artificial intelligence</a> can be used to consider complex variables, such as biomedical data, to predict someone’s biological age. </p>
<p>Biological age refers to how “old” their body is, rather than when they were born. A 30-year-old who smokes heavily may have a biological age closer to 40.</p>
<p><a href="https://www.mdpi.com/2227-7080/6/3/74/htm">Calculating a life expectancy reliably</a> would require a sophisticated system that considers a breadth of environmental, geographic, genetic and lifestyle factors – <a href="https://www1.health.gov.au/internet/publications/publishing.nsf/Content/oatsih-hpf-2012-toc%7Etier1%7Elife-exp-wellb%7E119">all of which have influence</a>.</p>
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<a href="https://images.theconversation.com/files/310166/original/file-20200115-151848-pc2cam.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/310166/original/file-20200115-151848-pc2cam.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/310166/original/file-20200115-151848-pc2cam.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=389&fit=crop&dpr=1 600w, https://images.theconversation.com/files/310166/original/file-20200115-151848-pc2cam.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=389&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/310166/original/file-20200115-151848-pc2cam.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=389&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/310166/original/file-20200115-151848-pc2cam.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=489&fit=crop&dpr=1 754w, https://images.theconversation.com/files/310166/original/file-20200115-151848-pc2cam.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=489&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/310166/original/file-20200115-151848-pc2cam.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=489&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 use of devices such as fitness trackers will become crucial in predicting personal life expectancy in the future.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-vector/healthy-lady-run-away-angel-death-329261456">Shutterstock</a></span>
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<p>With <a href="https://builtin.com/artificial-intelligence/machine-learning-healthcare">machine learning</a> and artificial intelligence, it’s becoming feasible to analyse larger quantities of data. The use of deep learning and cognitive computing, such as with <a href="https://www.ibm.com/watson-health">IBM Watson</a>, helps doctors make more accurate diagnoses than using human judgement alone. </p>
<p>This, coupled with <a href="https://www.cio.com/article/3273114/what-is-predictive-analytics-transforming-data-into-future-insights.html">predictive analytics</a> and increasing computational power, means we may soon have systems, or even apps, that can calculate life expectancy.</p>
<h2>There’s an app for that</h2>
<p>Much like <a href="https://www.mdanderson.org/for-physicians/clinical-tools-resources/clinical-calculators.html">existing tools</a> that predict cancer survival rates, in the coming years we may see apps attempting to analyse data to predict life expectancy.</p>
<p>However, they will not be able to provide a “death date”, or even a year of death.</p>
<p>Human behaviour and activities are so unpredictable, it’s almost impossible to measure, classify and predict lifespan. A personal life expectancy, even a carefully calculated one, would only provide a “natural life expectancy” based on generic data optimised with personal data.</p>
<p>The key to accuracy would be the quality and quantity of data available. Much of this would be taken directly from the user, including gender, age, weight, height and ethnicity.</p>
<p>Access to real-time sensor data through fitness trackers and smart watches could also monitor activity levels, heart rate and blood pressure. This could then be coupled with lifestyle information such as occupation, socioeconomic status, exercise, diet and family medical history. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/your-local-train-station-can-predict-health-and-death-54946">Your local train station can predict health and death</a>
</strong>
</em>
</p>
<hr>
<p>All of the above could be used to classify an individual into a generic group to calculate life expectancy. This result would then be refined over time through the analysis of personal data, updating a user’s life expectancy and letting them monitor it.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/308303/original/file-20191230-11891-nswi58.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/308303/original/file-20191230-11891-nswi58.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=176&fit=crop&dpr=1 600w, https://images.theconversation.com/files/308303/original/file-20191230-11891-nswi58.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=176&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/308303/original/file-20191230-11891-nswi58.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=176&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/308303/original/file-20191230-11891-nswi58.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=221&fit=crop&dpr=1 754w, https://images.theconversation.com/files/308303/original/file-20191230-11891-nswi58.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=221&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/308303/original/file-20191230-11891-nswi58.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=221&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">This figure shows how an individual’s life expectancy might change between two points in time (F and H) following a lifestyle improvement, such as weight loss.</span>
</figcaption>
</figure>
<h2>Two sides of a coin</h2>
<p>Life expectancy predictions have the potential to be beneficial to individuals, health service providers and governments.</p>
<p>For instance, they would make people more aware of their general health, and its improvement or deterioration over time. This may motivate them to make healthier lifestyle choices.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/faster-more-accurate-diagnoses-healthcare-applications-of-ai-research-114000">Faster, more accurate diagnoses: Healthcare applications of AI research</a>
</strong>
</em>
</p>
<hr>
<p>They could also be used by insurance companies to provide individualised services, such as how some car insurance companies use <a href="https://www.theguardian.com/money/2017/dec/16/motoring-myths-black-boxes-telematics-insurance">black-box technology</a> to reduce premiums for more cautious drivers.</p>
<p>Governments may be able to use predictions to more efficiently allocate limited resources, such as social welfare assistance and health care funding, to individuals and areas of greater need.</p>
<p>That said, there’s a likely downside. </p>
<p>People <a href="https://www.theatlantic.com/health/archive/2017/11/the-existential-slap/544790/">may become distressed</a> if their life expectancy is unexpectedly low, or at the thought of having one at all. This raises concerns about how such predictions could impact those who experience or are at risk of mental health problems. </p>
<p>Having people’s detailed health data could also let insurance companies more accurately profile applicants, <a href="https://www.abc.net.au/news/2019-07-08/fitness-tracker-used-to-set-health-insurance-premiums/11287126">leading to discrimination against groups or individuals</a>. </p>
<p>Also, pharmaceutical companies could coordinate targeted medical campaigns based on people’s life expectancy. And governments could choose to tax individuals differently, or restrict services for certain people.</p>
<h2>When will it happen?</h2>
<p>Scientists have been working on ways to <a href="https://towardsdatascience.com/what-really-drives-higher-life-expectancy-e1c1ec22f6e1">predict human life expectancy</a> for many years. </p>
<p>The solution would require input from specialists including demographers, health scientists, data scientists, IT specialists, programmers, medical professionals and statisticians.</p>
<p>While the collection of enough data will be challenging, we can likely expect to see advances in this area in the coming years.</p>
<p>If so, issues related to data compliance, as well and collaboration with government and state agencies will need to be carefully managed. Any system predicting life expectancy would handle highly sensitive data, raising ethical and privacy concerns.</p>
<p>It would also attract cybercriminals, and various other security threats.</p>
<p>Moving forward, the words of Jurassic Park’s Dr Ian Malcolm spring to mind:</p>
<blockquote>
<p>Your scientists were so preoccupied with whether or not they could, they didn’t stop to think if they should.</p>
</blockquote><img src="https://counter.theconversation.com/content/129068/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 organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Predicting life expectancy remains in the realm of science fiction, but it may soon be possible. Are we prepared for such information? And who else would benefit from this knowledge?James Jin Kang, Lecturer, Edith Cowan UniversityPaul Haskell-Dowland, Associate Dean (Computing and Security), Edith Cowan UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1257092019-11-10T18:57:09Z2019-11-10T18:57:09ZWe may one day grow babies outside the womb, but there are many things to consider first<figure><img src="https://images.theconversation.com/files/300419/original/file-20191106-88403-1g6r0ys.jpg?ixlib=rb-1.1.0&rect=1%2C4%2C997%2C744&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Researchers are developing artificial wombs as we speak. So we need to talk about the pros and cons before science fiction becomes reality.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-illustration/fetus-tank-54671101">from www.shutterstock.com</a></span></figcaption></figure><p><em>This is one of our occasional Essays on Health. It’s a long read. Enjoy!</em></p>
<p>The idea of growing babies outside the body has inspired <a href="https://daily.jstor.org/on-the-history-of-the-artificial-womb">novels and movies</a> for decades.</p>
<p>Now, research groups around the world are exploring the possibility of artificial gestation. For instance, one group <a href="https://www.nature.com/articles/ncomms15112">successfully grew</a> a lamb in an artificial womb <a href="https://www.huffingtonpost.com.au/2017/04/26/an-artificial-womb-has-successfully-grown-a-lamb-for-four-weeks_a_22055661/">for four weeks</a>. Australian researchers have also experimented with <a href="https://www.gizmodo.com.au/2019/03/artificial-wombs-are-getting-better-and-better/">artificial gestation for lambs</a> and <a href="https://www.wired.com/2011/09/artificial-shark-uterus/">sharks</a>. </p>
<p>And in recent weeks, researchers in The Netherlands <a href="https://www.theguardian.com/society/2019/oct/08/artificial-womb-dutch-researchers-given-29m-to-develop-prototype">have received €2.9m</a> (A$4.66m) to develop a prototype for gestating premature babies.</p>
<p>So it’s important to consider some of the ethical issues this technology might bring.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/from-frozen-ovaries-to-lab-grown-babies-the-future-of-childbirth-59912">From frozen ovaries to lab-grown babies: the future of childbirth</a>
</strong>
</em>
</p>
<hr>
<h2>What is an artificial womb?</h2>
<p>Growing a baby outside the womb is known as ectogenesis (or exogenesis). And we’re already using a form of it. When premature infants are transferred to humidicribs to continue their development in a neonatal unit, that’s partial ectogenesis.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/300421/original/file-20191106-88382-e2xvkf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/300421/original/file-20191106-88382-e2xvkf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/300421/original/file-20191106-88382-e2xvkf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/300421/original/file-20191106-88382-e2xvkf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/300421/original/file-20191106-88382-e2xvkf.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/300421/original/file-20191106-88382-e2xvkf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/300421/original/file-20191106-88382-e2xvkf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/300421/original/file-20191106-88382-e2xvkf.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">When premature infants are transferred to humidicribs to continue their development in a neonatal unit, that’s partial ectogenesis.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/incubator-sick-newborn-baby-neonatal-intensive-1532105090">from www.shutterstock.com</a></span>
</figcaption>
</figure>
<p>But an artificial womb could extend the period a fetus could be gestated outside the body. Eventually we might be able to do away with human wombs altogether.</p>
<p>This may sound far-fetched, but many scientists working in reproductive biotechnology believe that with the necessary scientific and legal support, full ectogenesis is a real possibility for the future.</p>
<h2>What would an artificial womb contain?</h2>
<p>An artificial womb would need an outer shell or chamber. That’s somewhere to implant the embryo and protect it as it grows. So far, animal experiments have used <a href="https://onlinelibrary.wiley.com/doi/pdf/10.1002/zoo.2042">acrylic tanks</a>, <a href="https://onlinelibrary.wiley.com/doi/pdf/10.1002/zoo.2042">plastics bags</a> and uterine tissues removed from an organism and artificially kept alive.</p>
<p>An artificial womb would also need a synthetic replacement for amniotic fluid, a shock absorber in the womb during natural pregnancy. </p>
<p>Finally, there would have to be a way to exchange oxygen and nutrients (so oxygen and nutrients in and carbon dioxide and waste products out). In other words, researchers would have to build an <a href="https://www.ncbi.nlm.nih.gov/pubmed/811007">artificial placenta</a>. </p>
<p>Animal experiments have used complex <a href="https://www.newscientist.com/article/mg13418180-400-japanese-pioneers-raise-kid-in-rubber-womb">catheter and pump systems</a>. But there are plans to use a mini version of <a href="https://www.mja.com.au/journal/2009/191/3/extracorporeal-membrane-oxygenation">extracorporeal membrane oxygenation</a>, a technique that allows blood to be oxygenated outside the body.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-business-of-ivf-how-human-eggs-went-from-simple-cells-to-a-valuable-commodity-119168">The business of IVF: how human eggs went from simple cells to a valuable commodity</a>
</strong>
</em>
</p>
<hr>
<p>Once these are in place, artificial gestation could one day <a href="https://www.sciencedaily.com/releases/2018/07/180703084127.htm">become as common as IVF</a> is today, a technique <a href="https://www.theguardian.com/society/2013/jul/12/story-ivf-five-million-babies">considered revolutionary</a> a few decades ago. </p>
<p>And just as in the case of IVF, there are many who are concerned about what this new realm of reproductive medicine might mean for the future of creating a family.</p>
<p>So what are some of the ethical considerations?</p>
<h2>Artificial wombs could help premature babies</h2>
<p>The main discussion about artificial wombs has focused on their potential benefit in increasing the survival rate of extremely premature babies. </p>
<p><a href="https://jme.bmj.com/content/44/11/75">Currently</a>, those born earlier than 22 weeks gestation have little-to-no hope of survival. And those born at 23 weeks are likely to suffer a range of disabilities. </p>
<p>Using a sealed “<a href="https://www.theguardian.com/science/2017/apr/25/artificial-womb-for-premature-babies-successful-in-animal-trials-biobag">biobag</a>”, which mimics the maternal womb might help extremely premature babies survive and improve their quality of life.</p>
<p>A biobag provides oxygen, a type of substitute amniotic fluid, umbilical cord access and all necessary water and nutrients (and medicine, if required). This could potentially allow the gestational period to be prolonged outside the womb until the baby has developed sufficiently to live independently and with good health prospects.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/dt7twXzNEsQ?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Premature lambs survived for four weeks in a ‘biobag’ at the Children’s Hospital of Philadelphia (Tech Insider/YouTube).</span></figcaption>
</figure>
<p>An artificial womb might provide an optimum environment for the fetus to grow, providing it with the appropriate balance of hormones and nutrients. It would also avoid exposing the growing fetus to external harms such as infectious diseases. </p>
<p>The technology might also make it easier to <a href="https://academic.oup.com/medlaw/advance-article/doi/10.1093/medlaw/fwz014/5510054?fbclid=IwAR1WMf6ZzWD5YgbQZBWHNDuCznVrNEMnL-a-8mlhrTb7Ar_jhWVBBb2rk5">perform surgery on the fetus</a> if needed.</p>
<p>And it could see the end of long-term hospital stays for premature infants, saving health care dollars in the process. This is particularly noteworthy considering some of the <a href="https://www.medibank.com.au/livebetter/newsroom/post/medibank-reveals-its-most-expensive-claims">largest private insurance payments</a> are currently for neonatal intensive care unit expenses.</p>
<h2>Artificial wombs could help with infertility and fertility</h2>
<p>This emerging reproductive technology may allow women who are infertile, either due to <a href="https://www.theguardian.com/lifeandstyle/2017/sep/04/artifical-womb-women-ectogenesis-baby-fertility">physiological or social reasons</a>, with the chance of having a child. It may also offer opportunities for transgender women and other women born without a uterus, or those who have lost their uterus due to cancer, injury or medical conditions, to have children. </p>
<p>Similarly, it could allow single men and gay male couples to become parents without needing a surrogate.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/300423/original/file-20191106-88372-iwxt0d.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/300423/original/file-20191106-88372-iwxt0d.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/300423/original/file-20191106-88372-iwxt0d.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/300423/original/file-20191106-88372-iwxt0d.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/300423/original/file-20191106-88372-iwxt0d.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/300423/original/file-20191106-88372-iwxt0d.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=504&fit=crop&dpr=1 754w, https://images.theconversation.com/files/300423/original/file-20191106-88372-iwxt0d.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=504&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/300423/original/file-20191106-88372-iwxt0d.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=504&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Artificial wombs could allow gay men to become parents without needing a surrogate.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/gay-couple-using-laptop-kitchen-522801235">from www.shutterstock.com</a></span>
</figcaption>
</figure>
<p>Will this lead to a broader discussion about <a href="https://www.theguardian.com/commentisfree/2017/may/01/artificial-womb-gender-family-equality-lam">gender roles and equality</a> in reproduction? Will it remove potential risks and expectations of pregnancy and childbirth currently only affecting women? Will this eliminate commercial surrogacy? </p>
<p>Equally, artificial wombs could help fertile women who for health or personal reasons choose not to be pregnant. It would allow those whose career choices, medication or lifestyle might otherwise expose a developing fetus to malformation or abnormality. </p>
<h2>Artificial wombs may harm women, reinforce inequality and lead to discrimination</h2>
<p>The prospect of artificial wombs might offer hope for many, but it also highlights a number of potential hazards.</p>
<p>For some women, using an artificial womb for gestation to continue might seem like a welcome alternative to terminating a pregnancy. But there are fears that other women thinking about an abortion might be compelled to use an artificial womb to continue gestation.</p>
<p>Whether artificial wombs should be allowed to influence a woman’s right to choose <a href="https://www.ncbi.nlm.nih.gov/pubmed/2904469">is already under debate</a>.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/whats-mothers-day-if-youve-been-born-in-a-machine-and-raised-by-robots-58631">What's Mother's Day if you've been born in a machine and raised by robots?</a>
</strong>
</em>
</p>
<hr>
<p>Artificial wombs might also further increase the gap between rich and poor. Wealthy prospective parents may opt to pay for artificial wombs, while poorer people will rely on women’s bodies to gestate their babies. Existing disparities in nutrition and exposure to pathogens between pregnancies across socio-economic divides could also be exacerbated.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/300425/original/file-20191106-88394-g7i272.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/300425/original/file-20191106-88394-g7i272.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/300425/original/file-20191106-88394-g7i272.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/300425/original/file-20191106-88394-g7i272.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/300425/original/file-20191106-88394-g7i272.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=504&fit=crop&dpr=1 754w, https://images.theconversation.com/files/300425/original/file-20191106-88394-g7i272.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=504&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/300425/original/file-20191106-88394-g7i272.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=504&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Artificial wombs might further increase the gap between rich and poor.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/image-gap-between-rich-poor-1108746449">from www.shutterstock.com</a></span>
</figcaption>
</figure>
<p>This raises issues of distribution of access. Will artificial wombs receive government funding? If it does, who should decide who gets subsidised access? Will there be a threshold to meet? </p>
<p>Other issues concern potential discrimination individuals born via an artificial womb may face. How do we prevent discrimination or invasive publicity and ensure individuals’ origin stories are not subject to negative public curiosity or ridicule?</p>
<p>Others might consider artificial wombs to be deeply repugnant and fundamentally against the natural reproductive order.</p>
<h2>Preparing for future wombs</h2>
<p>Currently, there is no prototype of an artificial womb for humans. And the technology is very much in its infancy. Yet we do need to consider ethical and legal issues before rushing headlong into this reproductive technology.</p>
<p>Not only do we need to ensure the technology is safe and works, we need to consider whether it’s the right path to take for different circumstances.</p>
<p>It might be easier to defend using artificial wombs in emergency situations, such as saving the lives of extremely premature neonates. However, using them in other circumstances might need broader social and policy considerations.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/we-must-develop-techno-wisdom-to-prevent-technology-from-consuming-us-91656">We must develop 'techno-wisdom' to prevent technology from consuming us</a>
</strong>
</em>
</p>
<hr>
<p>Without first establishing clear regulatory and ethico-legal frameworks, the development and release of artificial wombs could be problematic. We need to clearly outline pregnancy termination rights, parenthood and guardianship issues, limitations to experimentation, and other issues before the technology is fully realised and available. We need to do this soon rather than allowing the law to lag behind the science. </p>
<p>We recommend:</p>
<ul>
<li><p>approved protocols for testing artificial wombs that gradually extend the gestation period </p></li>
<li><p>funding that prevents discrimination on socio-economic grounds. This might be in the form of government funding to ensue a wide range of groups have access to the technology </p></li>
<li><p>clear legal guidelines for the status of ectogenetic embryos and fetuses, including what happens if prospective parents die, divorce or disagree on how to proceed</p></li>
<li><p>guidelines for access that calm public fears about misuse of emerging reproductive technologies.</p></li>
</ul>
<p>It is easy to get carried away with visions of utopian or dystopian societies. As radical and futuristic as artificial wombs might sound, it is important to pause and reflect on the present. </p>
<p>While this technology may solve some existing problems concerning inequality in reproduction, there are many other issues that demand our immediate attention.</p>
<p>Improving maternal health services, equal opportunity in the workplace, and reducing the impact of poor social determinants of health on fetal outcomes are all pressing concerns we must address now before we can consider what the future of reproductive biotechnology might hold.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/where-we-come-from-determines-how-we-fare-the-fetal-origins-of-adult-disease-3581">Where we come from determines how we fare – the fetal origins of adult disease</a>
</strong>
</em>
</p>
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<img src="https://counter.theconversation.com/content/125709/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 organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Yes, there are pros and cons of this new reproductive technology. But there are many other issues about maternal and child health we need to tackle first.Neera Bhatia, Associate Professor in Law, Deakin UniversityEvie Kendal, Lecturer in Bioethics and Health Humanities, Deakin UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1258422019-10-25T10:33:28Z2019-10-25T10:33:28ZLab-grown mini brains: we can’t dismiss the possibility that they could one day outsmart us<figure><img src="https://images.theconversation.com/files/298691/original/file-20191025-173554-1b31ue4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">It may not be science fiction anymore.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-illustration/human-brain-floating-liquid-bell-jar-1242833386?src=0cu5bB6HRKxhfgC7h18BLg-1-24"> 80's Child/Shutterstock</a></span></figcaption></figure><p>The cutting-edge method of growing clusters of cells that organise themselves into mini versions of human brains in the lab is gathering more and more attention. These “brain organoids”, made from stem cells, offer <a href="https://theconversation.com/lab-grown-mini-brains-shed-light-on-how-humans-split-from-great-apes-125331">unparalleled insights into the human brain</a>, which is notoriously difficult to study.</p>
<p>But some researchers <a href="https://www.theguardian.com/science/2018/apr/25/growing-brains-in-labs-why-its-time-for-an-ethical-debate">are worried</a> that a form of consciousness might arise in such mini-brains, which are sometimes transplanted into animals. They could at least be sentient to the extent of experiencing pain and suffering from being trapped. If this is true – and before we consider how likely it is – it is absolutely clear in my mind that we must exert a supreme level of caution when considering this issue.</p>
<p>Brain organoids are currently very simple compared to human brains and can’t be conscious in the same way. Due to a lack of blood supply, they do not reach sizes larger than around five or six millimetres. That said, they have been found to <a href="https://www.cell.com/cell-stem-cell/fulltext/S1934-5909(19)30337-6">produce brain waves</a> that are similar to those in premature babies. A study has showed they can also grow neural networks <a href="https://www.nature.com/articles/nbt.4127">that respond to light</a>.</p>
<p>There are also signs that such organoids can <a href="https://www.nature.com/articles/nbt.4127">link up with other organs</a> and receptors in animals. That means that they not only have a prospect of becoming sentient, they also have the potential to communicate with the external world, by collecting sensory information. Perhaps they can one day actually respond through sound devices or digital output. </p>
<p>As a cognitive neuroscientist, I am happy to conceive that an organoid maintained alive for a long time, with a constant supply of life-essential nutrients, could eventually become sentient and maybe even fully conscious. </p>
<h2>Time to panic?</h2>
<p>This isn’t the first time biological science has thrown up ethical questions. Gender reassignment shocked many in the past, but, whatever your beliefs and moral convictions, sex change narrowly concerns the individual undergoing the procedure, with limited or no biological impact on their entourage and descendants.</p>
<p><a href="https://theconversation.com/scientists-edit-human-embryos-to-safely-remove-disease-for-the-first-time-heres-how-they-did-it-81925">Genetic manipulation of embryos</a>, in contrast, raised alert levels to hot red, given the very high likelihood of genetic modifications being heritable and potentially changing the genetic make up of the population down the line. This is why successful operations of this kind conducted by Chinese scientist He Jianku <a href="https://theconversation.com/gene-edited-babies-china-wants-to-be-the-world-leader-but-at-what-cost-107643">raised very strong objections</a> worldwide.</p>
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<a href="https://images.theconversation.com/files/297095/original/file-20191015-98674-1ajs2qo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/297095/original/file-20191015-98674-1ajs2qo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/297095/original/file-20191015-98674-1ajs2qo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/297095/original/file-20191015-98674-1ajs2qo.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/297095/original/file-20191015-98674-1ajs2qo.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/297095/original/file-20191015-98674-1ajs2qo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/297095/original/file-20191015-98674-1ajs2qo.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/297095/original/file-20191015-98674-1ajs2qo.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">Human cerebral organoids range in size from a poppy seed to a small pea.</span>
<span class="attribution"><span class="source">NIH/Flickr</span></span>
</figcaption>
</figure>
<p>But creating mini brains inside animals, or even worse, within an artificial biological environment, should send us all frantically panicking. In my opinion, the ethical implications go well beyond determining whether we may be creating a suffering individual. If we are creating a brain – however small –– we are creating a system with a capacity to process information and, down the line, given enough time and input, potentially the ability to think.</p>
<p>Some form of consciousness is ubiquitous in the animal world, and we, as humans, are obviously on top of the scale of complexity. While we don’t know exactly what consciousness is, we still worry that human-designed AI may <a href="https://theconversation.com/robots-and-ai-could-soon-have-feelings-hopes-and-rights-we-must-prepare-for-the-reckoning-73462">develop some form of it</a>. But thought <a href="https://theconversation.com/ai-like-hal-9000-can-never-exist-because-real-emotions-arent-programmable-94141">and emotions</a> are likely to be emergent properties of our neurons organised into networks through development, and it is much more likely it could arise in an organoid than in a robot. This may be a primitive form of consciousness or even a full blown version of it, provided it receives input from the external world and finds ways to interact with it.</p>
<p>In theory, mini-brains could be grown forever in a laboratory – whether it is legal or not – increasing in complexity and power for as long as their life-support system can provide them with oxygen and vital nutrients. This is the case for the <a href="https://en.wikipedia.org/wiki/Henrietta_Lacks">cancer cells of a woman called Henrietta Lacks</a>, which are alive more than 60 years after her death and multiplying today in hundreds of thousands of labs throughout the world.</p>
<h2>Disembodied super intelligence?</h2>
<p>But if brains are cultivated in the laboratory in such conditions, without time limit, could they ever develop a form of consciousness that surpasses human capacity? As I see it, why not? </p>
<p>And if they did, would we be able to tell? What if such a new form of mind decided to keep us, humans, in the dark about their existence – be it only to secure enough time to take control of their life-support system and ensure that they are safe? </p>
<p>When I was an adolescent, I often had scary dreams of the world being taken over by a giant computer network. I still have that worry today, and it has partly become true. But the scare of a biological super-brain taking over is now much greater in my mind. Keep in mind that such new organism would not have to worry about their body becoming old and dying, because they would not have a body.</p>
<p>This may sound like the first lines of a bad science fiction plot, but I don’t see reasons to dismiss these ideas as forever unrealistic. </p>
<p>The point is that we have to remain vigilant, especially given that this could all happen without us noticing. You just have to consider how difficult it is to assess whether someone is lying when testifying in court to realise that we will not have an easy task trying to work out the hidden thoughts of a lab grown mini-brain.</p>
<p>Slowing the research down by controlling organoid size and life span, or widely agreeing a moratorium before we reach a point of no return, would make good sense. But unfortunately, the growing ubiquity of biological labs and equipment will make enforcement incredibly difficult – as we’ve seen with <a href="https://www.theguardian.com/science/2018/nov/28/scientist-in-china-defends-human-embryo-gene-editing">genetic embryo editing</a>.</p>
<p>It would be an understatement to say that I share the worries of some of my colleagues working in the field of cellular medicine. The toughest question that we can ask regarding these mesmerising possibilities, and which also applies to genetic manipulations of embryos, is: can we even stop this?</p><img src="https://counter.theconversation.com/content/125842/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Guillaume Thierry 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 worry about AI developing consciousness, but brain organoids may be more likely to do so.Guillaume Thierry, Professor of Cognitive Neuroscience, Bangor UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1177592019-05-24T13:16:00Z2019-05-24T13:16:00ZWithdrawing life support: only one person’s view matters<p>Shortly before Frenchman Vincent Lambert’s life support was due to be removed, doctors at Sebastopol Hospital in Reims, France, were ordered to stop. An appeal court ruled that <a href="https://www.bbc.co.uk/news/world-europe-48344426">life support must continue</a>.</p>
<p>Lambert was seriously injured in a motorcycle accident in 2008 and has been diagnosed as being in a persistent vegetative state. Since 2014, his case has been heard many times in French and European courts. </p>
<p>His wife, who is his legal guardian, wishes artificial nutrition and hydration to be stopped and Vincent to be allowed to die. His parents are opposed to this. On Monday, May 20, the parents succeeded in a last-minute legal appeal to stop Vincent’s doctors from withdrawing feeding, pending a review by a UN Committee on the Rights of Persons with Disabilities.</p>
<p><a href="https://www.bbc.co.uk/news/world-europe-48344426">Lambert’s case</a> is the latest example of disputed treatment for adult patients with profound brain injury. The case has obvious parallels with that of <a href="https://www.cbsnews.com/pictures/look-back-in-history-terri-schiavo-death/">Terri Schiavo</a>, in the US who died in 2005 following seven years of legal battles. And there have been <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1255938/">other similar high-profile cases</a> over more than 40 years, including <a href="https://en.wikipedia.org/wiki/Eluana_Englaro">Elena Englaro</a> (Italy, court cases 1999-2008), <a href="https://en.wikipedia.org/wiki/Tony_Bland">Tony Bland</a> (UK 1993) <a href="https://en.wikipedia.org/wiki/Cruzan_v._Director,_Missouri_Department_of_Health">Nancy Cruzan</a> (US 1988-90) and <a href="https://en.wikipedia.org/wiki/In_re_Quinlan">Karen Ann Quinlan</a> (US 1975-76).</p>
<h2>Contrasting responses</h2>
<p>There are two contrasting responses to cases like that of Lambert. Some people read about his case and react with horror at the idea of being kept alive against their will in a state where they are completely dependent, unaware of their surroundings and with no apparent prospect of ever recovering. </p>
<p>Other people respond with horror at the idea of stopping feeding and allowing a profoundly disabled man to die, when he does not appear to be suffering and could be sustained in his current condition for months or years.</p>
<p>There are also contrasting ethical arguments. Some people point to the lack of benefit for Vincent in continued life. Because he has no conscious interests, it is not in his best interests to keep him alive, the argument goes. Others contend that his essential human dignity remains despite his profound disability and that his life must be protected “<a href="https://www.vaticannews.va/en/pope/news/2019-05/vincent-lambert-pope-tweet-life-support-resumes.html">until its natural end</a>”. </p>
<p>The UN <a href="https://www.ohchr.org/en/hrbodies/crpd/pages/crpdindex.aspx">Committee for the Rights of Persons with Disabilities</a> might have concern for the rights of the severely disabled to receive life-prolonging medical treatment. But there is a potentially competing right for disabled persons not to receive treatments they would not have wanted and not to have their lives prolonged in states they would have regarded as deeply undesirable.</p>
<p>It can be useful to debate such questions, but the long history of similar cases points to the ongoing challenge of reaching a common view on these issues. Quite simply, we will never all agree on what should happen in such cases. There are opposing reasonable ethical views. The important question is: <a href="https://www.uk.elsevierhealth.com/ethics-conflict-and-medical-treatment-for-children-9780702077814.html">what should we do in the face of such intractable disagreement</a>?</p>
<p>Our societies are increasingly diverse; we have to accept that people have a range of different values and we should tolerate those differences. That acceptance and tolerance mean that we should allow people to live their lives based on their own ethical views and values, as long as they don’t harm others. It is perfectly acceptable for people to express their views about situations, such as that of Vincent Lambert. But it is not acceptable to impose other people’s views on Lambert’s life.</p>
<p>The only defensible ethical response to reasonable disagreement in cases like that of Vincent Lambert is to make decisions based on his values and wishes. If, as is claimed by Vincent’s wife, Vincent would not have wished to remain alive, then the wishes of his parents, of other doctors or of the Pope, are irrelevant. My views or your views on the matter, likewise, are of no consequence. Only Vincent’s wishes matter. And so life support must stop.</p><img src="https://counter.theconversation.com/content/117759/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Dominic Wilkinson receives funding from The Wellcome Trust. </span></em></p>The pope, presidents and parents can voice their opinion on right-to-die cases, but they shouldn’t get to decide.Dominic Wilkinson, Consultant Neonatologist and Professor of Ethics, University of OxfordLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1086582018-12-17T11:38:30Z2018-12-17T11:38:30ZChina’s win-at-all-costs approach suggests it will follow its own dangerous path in biomedicine<figure><img src="https://images.theconversation.com/files/250793/original/file-20181216-185252-pog7ka.jpg?ixlib=rb-1.1.0&rect=400%2C30%2C4546%2C2589&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Megacity Shenzhen, as seen from Hong Kong, is a center for Chinese finance and tech.</span> <span class="attribution"><a class="source" href="http://www.apimages.com/metadata/Index/China-Shenzhen-Rising/b6f947b7e94d4cf6ba3d70b8d2512584/6/0">AP Photo/Kin Cheung</a></span></figcaption></figure><p><a href="https://theconversation.com/rogue-science-strikes-again-the-case-of-the-first-gene-edited-babies-107684">The world was shocked</a> by <a href="https://www.apnews.com/4997bb7aa36c45449b488e19ac83e86d">Chinese scientist He Jiankui’s recent claim</a> that he’d brought to term twin babies whose genes – inheritable by their own potential descendants – he had modified as embryos. The genetic edit, He said, was meant to make the girls resistant to HIV infection.</p>
<p>Scientists within China and across the world responded to the announcement <a href="https://www.nytimes.com/2018/11/26/health/gene-editing-babies-china.html">with a mixture of</a> <a href="https://www.nytimes.com/2018/11/30/world/asia/gene-editing-babies-china.html">incredulity and alarm</a>.</p>
<p>But as a <a href="http://hallamstevens.org">historian of biology</a> who has closely followed biomedicine in China over the past few years, I was less surprised by these developments. Set within the context of China’s <a href="https://doi.org/10.1038/d41586-018-07692-4">approach to biomedical ethics</a> and its rampant global ambitions, He’s actions fit into a wider pattern of dangerous excess.</p>
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<a href="https://images.theconversation.com/files/250794/original/file-20181216-185264-c6oan.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/250794/original/file-20181216-185264-c6oan.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/250794/original/file-20181216-185264-c6oan.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/250794/original/file-20181216-185264-c6oan.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/250794/original/file-20181216-185264-c6oan.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/250794/original/file-20181216-185264-c6oan.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/250794/original/file-20181216-185264-c6oan.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/250794/original/file-20181216-185264-c6oan.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">He Jiankui’s announcement included plenty of careful image cultivation.</span>
<span class="attribution"><a class="source" href="http://www.apimages.com/metadata/Index/China-Gene-Edited-Babies/5673e068deba45ce82d5b3b5ae085bd6/4/0">AP Photo/Mark Schiefelbein</a></span>
</figcaption>
</figure>
<p>Since He did not publish any of his results in scientific journals there’s no way of knowing yet whether his claims are true, <a href="https://www.wsj.com/articles/gene-edited-babies-experiment-raises-concerns-11544616000">false</a> or exaggerated in some way. But what seems the most surprising outside of China is that He believed – gambled, perhaps – that his announcement would be met with congratulations and acclaim. Didn’t he know that he’d be condemned? Why take such a risk?</p>
<h2>Different history frames what’s acceptable</h2>
<p>China’s relationship to biomedical ethics is <a href="https://link.springer.com/article/10.1057%2Fbiosoc.2015.34">very different from that of the West</a>.</p>
<p>In the West, after-the-fact condemnation of Nazi medical experiments, the <a href="https://en.wikipedia.org/wiki/Tuskegee_syphilis_experiment">Tuskegee syphilis experiment</a> and other patient abuses led to the rise of <a href="http://rc.rcjournal.com/content/53/10/1330">Institutional Review Boards</a> that carefully regulate medical experimentation on humans. China has its own history of dubious medical research, including by <a href="https://en.wikipedia.org/wiki/Unit_731">Japanese scientists during World War II</a>, but it didn’t result in the development of similar kinds of home-grown bioethics institutions. Although many hospitals and universities in China do now have Institutional Review Boards, they’re <a href="http://www.wpro.who.int/health_research/ethics/challenges_and_issues_of_concerned_regarding_the_research_ethics_qinglihu.pdf">not nearly as established</a> – or consistent in their practices – as those in the U.S. and Europe. </p>
<p>This does not excuse He’s actions. After all, he was trained in the U.S. and was surely aware of Western norms. But He’s willingness to engage in undoubtedly risky and dangerous actions suggests that he was working in a very different ethical context. </p>
<p>Apart from merely an <a href="https://theconversation.com/crispr-babies-raise-an-uncomfortable-reality-abiding-by-scientific-standards-doesnt-guarantee-ethical-research-108008">absence of compelling ethical oversight</a>, the broader attitudes toward biomedical research in China are important in explaining He’s annoucement. In the West, the potential benefits of biomedicine and biotechnologies are often <a href="https://www.fda.gov/Safety/Biotechnology/ucm624416.htm">weighed against potential harms</a>. In Europe and the U.S., many people <a href="https://theconversation.com/mandatory-labels-with-simple-disclosures-reduced-fears-of-ge-foods-in-vermont-98915">view genetically modified foods</a> with caution and treat <a href="https://theconversation.com/20-years-after-dolly-everything-you-always-wanted-to-know-about-the-cloned-sheep-and-what-came-next-72655">cloning</a> and <a href="https://stemcells.nih.gov/info/basics/1.htm">stem cells</a> with outright distrust. </p>
<p>China came to biotech late in the game, <a href="https://doi.org/10.1007/s13238-017-0474-7">scraping into the Human Genome Project</a> in the 1990s. Even so, both the Chinese state and Chinese scientists saw the field as an area in which <a href="https://rowman.com/ISBN/9780742553064/Biology-and-Revolution-in-Twentieth-Century-China">China had a good chance of catching up to the West</a>. As such, it gambled heavily and has <a href="https://doi.org/10.1038/d41586-018-00542-3">invested much in biotech</a> and biomedicine. <a href="https://doi.org/10.1086/699235">Having followed</a> <a href="https://www.bgi.com/us/">one of China’s most prominent biotech companies</a> for years, I can attest that these fields are seen as critical to sustaining China’s growing population: feeding people through agricultural technologies and keeping people healthy through new medicines and therapies.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/250795/original/file-20181216-185240-1kaq6tl.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/250795/original/file-20181216-185240-1kaq6tl.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/250795/original/file-20181216-185240-1kaq6tl.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/250795/original/file-20181216-185240-1kaq6tl.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/250795/original/file-20181216-185240-1kaq6tl.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/250795/original/file-20181216-185240-1kaq6tl.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/250795/original/file-20181216-185240-1kaq6tl.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/250795/original/file-20181216-185240-1kaq6tl.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=424&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">In January 2018, Chinese scientists claimed they’d made the first primate clones.</span>
<span class="attribution"><a class="source" href="http://www.apimages.com/metadata/Index/Cloned-Monkeys/b928cdea7abb4be99475b70d852c05dd/2/0">Qiang Sun and Mu-ming Poo/Chinese Academy of Sciences via AP</a></span>
</figcaption>
</figure>
<p>The upshot of all this is that Chinese view biomedicine in dramatically positive terms. Advances in biomedicine can have an <a href="http://www.globaltimes.cn/content/1126725.shtml">almost heroic status within China</a>. </p>
<p>He’s claims about genetic modification fit this model. He has represented his use of genetic modification as a bold intervention to save the lives of twin girls and eliminate discrimination against HIV patients. He himself is (or at least was) somewhat of a heroic figure. He completed his Ph.D. at Rice University and postdoctoral training at Stanford before being sponsored by the Chinese government to return to his homeland under the “<a href="http://www.1000plan.org/en/">Thousand Talents Plan</a>,” which aims to recruit top scientists back to Chinese universities. In 2018, he was <a href="https://www.thehastingscenter.org/jiankuis-genetic-misadventure-china/">nominated for the China Youth Science and Technology Award</a>. He was a rising star.</p>
<h2>Moving fast and breaking things</h2>
<p>In 2012, back from the U.S., He Jiankui joined <a href="http://sustc.edu.cn/en/">Southern University of Science and Technology</a>, an institution set up in Shenzhen in 2011. This local setting is important too. Shenzhen, the city that sprang up from China’s first <a href="https://en.wikipedia.org/wiki/Special_economic_zones_of_China">Special Economic Zone</a>, was an experiment in China’s reform and opening. Since 1980, Shenzhen has been a <a href="https://www.press.uchicago.edu/ucp/books/book/chicago/L/bo24731869.html">zone of experimentation</a>, a place of high risk and high reward. Both penniless farmers and entrepreneurs have gone there to <a href="https://www.penguinrandomhouse.com/books/26101/factory-girls-by-leslie-t-chang/9780385520188/">make their fortune</a>.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/250796/original/file-20181216-185258-1283jvn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/250796/original/file-20181216-185258-1283jvn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/250796/original/file-20181216-185258-1283jvn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/250796/original/file-20181216-185258-1283jvn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/250796/original/file-20181216-185258-1283jvn.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/250796/original/file-20181216-185258-1283jvn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/250796/original/file-20181216-185258-1283jvn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/250796/original/file-20181216-185258-1283jvn.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">Shenzhen’s busy Seg electronics market is a popular place for hardware startup entrepreneurs to buy components for their inventions and prototypes.</span>
<span class="attribution"><a class="source" href="http://www.apimages.com/metadata/Index/China-Shenzhen-Rising/48a79758747244a486996552bbcf46e1/5/0">AP Photo/Kelvin Chan</a></span>
</figcaption>
</figure>
<p>This has resulted in some great successes: Shenzhen is the home of Huawei, Tencent, BGI, BYD, and hundreds of other <a href="https://www.scmp.com/lifestyle/technology/enterprises/article/1765430/top-5-tech-giants-who-shape-shenzhen-chinas-silicon">thriving companies</a>. But such experiments have also generated problems. The capitalist excesses that have come with reform and opening up – <a href="https://www.forbes.com/sites/yanzhonghuang/2014/07/16/the-2008-milk-scandal-revisited/#4d669b0b4105">doctored milk</a>, <a href="https://www.cnn.com/2018/07/23/asia/faulty-vaccine-china-intl/index.html">fake vaccines</a> and <a href="https://en.wikipedia.org/wiki/Gutter_oil">gutter oil</a> – are now well known. And Shenzhen is a place where such excesses – particularly <a href="https://www.washingtonpost.com/news/wonk/wp/2017/08/14/trump-administration-goes-after-china-over-intellectual-property-advanced-technology/">violations of intellectual property rules</a> – have been particularly rampant.</p>
<p>He’s reckless experimentation looks like the result of such an attitude, as applied to biomedicine. It is not just scientific competition and a “<a href="https://www.nytimes.com/2018/11/30/world/asia/gene-editing-babies-china.html">drive to succeed</a>,” but arguably a wider atmosphere of success through excess. The release of a <a href="https://www.youtube.com/watch?v=th0vnOmFltc">YouTube video</a> alongside He’s announcement suggests that his actions are motivated by personal aggrandizement and <a href="https://theconversation.com/youtube-persuasion-and-genetically-engineered-children-107938">fame- and fortune-seeking</a>.</p>
<p>Like those other scandals involving tainted products, He’s genetic modification is yet another failure by the Chinese government to protect its vulnerable citizens – in this case, unborn children – from predatory individuals and companies. </p>
<p>From an even broader perspective, such excesses might be seen as collateral damage from global competition and rapid development. In developing “<a href="https://en.wikipedia.org/wiki/Socialism_with_Chinese_characteristics">socialism with Chinese characteristics</a>” and in its reform and opening up, China has followed its own political path, often proving <a href="https://foreignpolicy.com/2018/08/08/china-doesnt-want-to-play-by-the-worlds-rules/">unwilling to follow international norms</a>. And Shenzhen – the world’s capital of tech hardware development – has found its <a href="https://www.wired.com/beyond-the-beyond/2018/08/new-shanzhai-%E5%B1%B1%E5%AF%A8-shanzhai/">own models of innovation</a> that now rival Silicon Valley’s. Catching up with – and surpassing – the West has motivated divergent, and sometimes ugly, actions. Take the <a href="https://www.forbes.com/sites/davidvolodzko/2018/12/11/what-the-huawei-scandal-says-about-american/#56029c6751b0">recent scandal involving Huawei</a>, for instance. </p>
<p>China may decide to forge its own path in science, too, following trajectories that would not be possible in the West. For now, He <a href="https://qz.com/1474530/chinese-scientists-condemn-crispr-baby-experiment-as-crazy/">remains shunned within China</a>. But if his reckless experiments do turn out to be a world first, Chinese scientists may embrace them – and him.</p>
<p>Science and public policy scholar <a href="https://scholar.google.com/citations?user=OBu0OHEAAAAJ&hl=en&oi=ao">Caroline Wagner</a> has argued that He’s actions will <a href="https://news.osu.edu/crispr-babies-and-other-ethical-missteps-in-science-threaten-chinas-global-standing/">threaten China’s position in the global scientific order</a> by undermining the willingness of scientists elsewhere to collaborate with them: “A global system that works by reputation will shun those who do not play by the rules.” But these rules are Western ones. And China may decide it can go its own way.</p><img src="https://counter.theconversation.com/content/108658/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Hallam Stevens receives funding from the Ministry of Education, Singapore. </span></em></p>CRISPR babies may be just the beginning. China has a different take than the West on ethics and how to get ahead in business and other endeavors.Hallam Stevens, Associate Professor of History, Nanyang Technological UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/817972017-08-01T22:36:56Z2017-08-01T22:36:56ZHuman genome editing: We should all have a say<figure><img src="https://images.theconversation.com/files/180420/original/file-20170731-22134-1s9uda.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Controversial gene editing should not proceed without citizen input and societal consensus.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Shoukhrat Mitalipov, a reproductive biologist at Oregon Health and Science University, is nothing if not a pioneer. In 2007, his team published proof-of-principle research in primates showing it was possible to <a href="https://dx.doi.org/10.1038/nature06357">derive stem cells from cloned primate embryos</a>. In 2013, his team was the first to <a href="https://theconversation.com/human-embryonic-stem-cells-grown-from-skin-tissue-14339">create human embryonic stem cells by cloning</a>. Now, in 2017, <a href="https://dx.doi.org/10.1038/nature23305">his team has reported safely and effectively modifying human embryos with the MYBPC3 mutation (which causes myocardial disease)</a> using the gene editing technique <a href="https://theconversation.com/explainer-crispr-technology-brings-precise-genetic-editing-and-raises-ethical-questions-39219">CRISPR</a>. </p>
<p>Mitalipov’s team is not the first to genetically modify human embryos. This was first accomplished in 2015 by <a href="http://www.nature.com/news/chinese-scientists-genetically-modify-human-embryos-1.17378">a group of Chinese scientists led by Junjiu Huang</a>. Mitalipov’s team, however, may be the first to demonstrate basic safety and efficacy using the CRISPR technique. </p>
<p>This has serious implications for the ethics debate on human germline modification which involves inserting, deleting or replacing the DNA of human sperm, eggs or embryos to change the genes of future children. </p>
<h2>Ethically controversial</h2>
<p>Those who support human embryo research will argue that Mitalipov’s research to alter human embryos is ethically acceptable because the embryos were not allowed to develop beyond 14 days (the widely accepted international limit on human embryo research) and because the modified embryos were not used to initiate a pregnancy. They will also point to the future potential benefit of correcting defective genes that cause inherited disease. </p>
<p>This research is ethically controversial, however, because it is a clear step on the path to making heritable modifications - genetic changes that can be passed down through subsequent generations.</p>
<h2>Beyond safety and efficacy</h2>
<p>Internationally, <a href="http://en.unesco.org/news/unesco-panel-experts-calls-ban-editing-human-dna-avoid-unethical-tampering-hereditary-traits">UNESCO has called for a ban</a> on human germline gene editing. And the “Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine” – the <a href="http://www.coe.int/en/web/conventions/full-list/-/conventions/rms/090000168007cf98">Oviedo Convention</a> – specifies that “an intervention seeking to modify the human genome may only be undertaken for preventive, diagnostic or therapeutic purposes and only if its aim is not to introduce any modification in the genome of any descendants.”</p>
<p>In a move away from the positions taken by UNESCO and included in the Oviedo Convention, in 2015 the 12-person Organizing Committee of the first <a href="http://nationalacademies.org/gene-editing/Gene-Edit-Summit/">International Summit on Human Gene Editing</a> (of which I was a member) <a href="http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=12032015a">issued a statement</a> endorsing basic and preclinical gene editing research involving human embryos. </p>
<p>The statement further stipulated, however, that: “It would be irresponsible to proceed with any clinical use of germline editing unless and until (i) the relevant safety and efficacy issues have been resolved, based on appropriate understanding and balancing of risks, potential benefits, and alternatives, and (ii) there is broad societal consensus about the appropriateness of the proposed application.”</p>
<p>Mitalipov’s research aims to address the first condition about safety and efficacy. But what of the second condition which effectively recognizes that the human genome belongs to all of us and that it is not for scientists or other elites to decree what should or should not happen to it?</p>
<h2>Modification endorsed</h2>
<p>Since the 2015 statement was issued, many individuals and groups have tried to set aside the recommendation calling for a broad societal consensus. </p>
<p>For example, in February 2017, the U.S. National Academy of Sciences and National Academy of Medicine <a href="https://www.nap.edu/catalog/24623/human-genome-editing-science-ethics-and-governance">published a report</a> endorsing germline modification. It states unequivocally that “clinical trials using heritable germline genome editing should be permitted” provided the research is only for compelling reasons and under strict oversight limiting uses of the technology to specified criteria.</p>
<h2>Seeds of change in Canada</h2>
<p>In Canada, it is illegal to modify human germ cells. Altering “the genome of a cell of a human being or in vitro embryo such that the alteration is capable of being transmitted to descendants” is among the activities prohibited in the 2004 <a href="http://laws-lois.justice.gc.ca/eng/acts/a-13.4/FullText.html">Assisted Human Reproduction Act</a>. </p>
<p>Worried that “Canadian researchers may fall behind on the international scene” and that “restrictive research policies may lead to medical tourism,” the Canadian Institutes for Health Research (with input from the <a href="http://stemcellnetwork.ca/about-scn/">Canadian Stem Cell Network</a>) has begun to plant the seeds of change. </p>
<p>In its <a href="http://www.cihr-irsc.gc.ca/e/50158.html">Human Germline Gene Editing</a> report, CIHR hints at the benefits of changing the legislation. It also suggests professional self-regulation and research funding guidelines could replace the current federal statutory prohibition.</p>
<h2>Future of the species</h2>
<p>With Mitalipov’s technological advances and increasing suggestions from researchers that heritable modifications to human embryos be permitted, it is essential that citizens be given opportunities to think through the ethical issues and to work towards broad societal consensus. </p>
<p>We are talking about nothing less than the future of the human species. No decisions about the modification of the germline should be made without broad societal consultation. </p>
<p>Nothing about us without us!</p><img src="https://counter.theconversation.com/content/81797/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Françoise Baylis has received past funding from the Canadian Institutes for Health Research and the Stem Cell Network.</span></em></p>A team in the U.S. is said to have safely and effectively altered human embryos. The news is a reminder that citizens must be consulted on developments potentially affecting the future of the species.Françoise Baylis, Research Professor, Philosophy, Dalhousie UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/817322017-07-28T15:40:07Z2017-07-28T15:40:07ZEditing human embryos with CRISPR is moving ahead – now’s the time to work out the ethics<figure><img src="https://images.theconversation.com/files/180229/original/file-20170728-15340-1460v93.jpg?ixlib=rb-1.1.0&rect=35%2C73%2C1173%2C805&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">There's still a way to go from editing single-cell embryos to a full-term 'designer baby.'</span> <span class="attribution"><a class="source" href="https://www.flickr.com/photos/zeissmicro/27771482282">ZEISS Microscopy</a>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span></figcaption></figure><p>The announcement by researchers in Portland, Oregon that they’ve successfully modified the genetic material <a href="https://www.technologyreview.com/s/608350/first-human-embryos-edited-in-us/">of a human embryo</a> took some people by surprise.</p>
<p>With headlines referring to “<a href="https://www.businesslive.co.za/bd/world/americas/2017-07-27-us-university-edits-embryo-genes-in-experiment-hailed-as-groundbreaking/">groundbreaking</a>” research and “<a href="http://www.dailymail.co.uk/sciencetech/article-4734364/First-editing-human-embryos-carried-United-States.html">designer babies</a>,” you might wonder what the scientists actually accomplished. This was a big step forward, but hardly unexpected. As this kind of work proceeds, it continues to raise questions about ethical issues and how we should we react.</p>
<h2>What did researchers actually do?</h2>
<p>For a number of years now we have had the ability to alter genetic material in a cell, using a technique called CRISPR.</p>
<p>The DNA that makes up our genome comprises long sequences of base pairs, each base indicated by one of four letters. These letters form a genetic alphabet, and the “words” or “sentences” created from a particular order of letters are the genes that determine our characteristics.</p>
<p>Sometimes words can be “misspelled” or sentences slightly garbled, resulting in a disease or disorder. Genetic engineering is designed to correct those mistakes. CRISPR is a tool that enables scientists to target a specific area of a gene, working like the search-and-replace function in Microsoft Word, to remove a section and insert the “correct” sequence. </p>
<p>In the last decade, CRISPR has been the primary tool for those seeking to modify genes – human and otherwise. Among other things, it has been used in experiments to make <a href="https://doi.org/10.1038/nbt.3439">mosquitoes resistant to malaria</a>, genetically <a href="http://www.genengnews.com/gen-exclusives/crispr-applications-in-plants/77900846">modify plants to be resistant to disease</a>, explore the possibility of <a href="https://doi.org/10.1038/nature.2015.18448">engineered pets</a> and <a href="https://www.sciencenews.org/blog/science-ticker/crispr-used-cows-help-fight-tuberculosis">livestock</a>, and potentially treat some human diseases (including <a href="http://sites.tufts.edu/crispr/applications/hiv-treatment/">HIV</a>, <a href="https://doi.org/10.15252/emmm.201606325">hemophilia</a> and <a href="https://doi.org/10.1016/j.omtn.2016.12.012">leukemia</a>).</p>
<p>Up until recently, the focus in humans has been on changing the cells of a single individual, and not changing eggs, sperm and early embryos – what are called the “germline” cells that pass traits along to offspring. The theory is that focusing on non-germline cells would limit any unexpected long-term impact of genetic changes on descendants. At the same time, this limitation means that we would have to use the technique in every generation, which affects its potential therapeutic benefit.</p>
<p>Earlier this year, an international committee convened by the National Academy of Sciences <a href="https://doi.org/10.17226/24623">issued a report</a> that, while highlighting the concerns with human germline genetic engineering, laid out a series of <a href="http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=24623">safeguards and recommended oversight</a>. The report was widely regarded as opening the door to embryo-editing research.</p>
<p>That is exactly what happened in Oregon. Although this is the first study reported in the United States, similar research has been <a href="https://doi.org/10.1007/s13238-015-0153-5">conducted in China</a>. This new study, however, apparently avoided previous errors we’ve seen with CRISPR – such as changes in other, untargeted parts of the genome, or the desired change not occurring in all cells. Both of these problems had made scientists wary of using CRISPR to make changes in embryos that might eventually be used in a human pregnancy. Evidence of more successful (and thus safer) CRISPR use may lead to additional studies involving human embryos.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/180203/original/file-20170728-5295-1tgc36j.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/180203/original/file-20170728-5295-1tgc36j.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/180203/original/file-20170728-5295-1tgc36j.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=402&fit=crop&dpr=1 600w, https://images.theconversation.com/files/180203/original/file-20170728-5295-1tgc36j.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=402&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/180203/original/file-20170728-5295-1tgc36j.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=402&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/180203/original/file-20170728-5295-1tgc36j.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=505&fit=crop&dpr=1 754w, https://images.theconversation.com/files/180203/original/file-20170728-5295-1tgc36j.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=505&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/180203/original/file-20170728-5295-1tgc36j.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"></a>
<figcaption>
<span class="caption">We have a ways to go before ordering up desired traits in a future baby. Researchers at Oregon Health and Science University say they worked with single-cell embryos, inserting CRISPR chemicals at the time of fertilization.</span>
<span class="attribution"><a class="source" href="https://www.flickr.com/photos/lunarcaustic/3233482244">lunar caustic</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<h2>What didn’t happen in Oregon?</h2>
<p>First, this study did not entail the creation of “designer babies,” despite some news headlines. The research involved only early stage embryos, outside the womb, none of which was allowed to develop beyond a few days.</p>
<p>In fact, there are a number of existing limits – both policy-based and scientific – that will create barriers to implanting an edited embryo to achieve the birth of a child. There is a <a href="https://www.nih.gov/about-nih/who-we-are/nih-director/statements/statement-nih-funding-research-using-gene-editing-technologies-human-embryos">federal ban on funding</a> gene editing research in embryos; in some states, there are also <a href="https://nyscf.org/scmapus">total bans on embryo research</a>, regardless of how funded. In addition, the implantation of an edited human embryos would be regulated under the <a href="https://humansubjects.nih.gov/pregnant-women-human-fetuses-neonates">federal human research regulations</a>, the <a href="https://www.fda.gov/biologicsbloodvaccines/cellulargenetherapyproducts/">Food, Drug and Cosmetic Act</a> and potentially the federal rules regarding <a href="https://wwwn.cdc.gov/CLIA/Regulatory/default.aspx">clinical laboratory testing</a>.</p>
<p>Beyond the regulatory barriers, we are a long way from having the scientific knowledge necessary to design our children. While the Oregon experiment focused on a single gene correction to inherited diseases, there are few human traits that are controlled by one gene. Anything that involves multiple genes or a gene/environment interaction will be less amenable to this type of engineering. Most characteristics we might be interested in designing – such as intelligence, personality, athletic or artistic or musical ability – are much more complex.</p>
<p>Second, while this is a significant step forward in the science regarding the use of the CRISPR technique, it is only one step. There is a long way to go between this and a cure for various disease and disorders. This is not to say that there aren’t concerns. But we have some time to consider the issues before the use of the technique becomes a mainstream medical practice.</p>
<h2>So what should we be concerned about?</h2>
<p>Taking into account the cautions above, we do need to decide when and how we should use this technique.</p>
<p>Should there be limits on the types of things you can edit in an embryo? If so, what should they entail? These questions also involve deciding who gets to set the limits and control access to the technology.</p>
<p>We may also be concerned about who gets to control the subsequent research using this technology. Should there be state or federal oversight? Keep in mind that we cannot control what happens in other countries. Even in this country it can be difficult to craft guidelines that restrict only the research someone finds objectionable, while allowing other important research to continue. Additionally, the use of assisted reproductive technologies (IVF, for example) is <a href="http://www.rockinst.org/pdf/health_care/2009-07-States_Regulation_ART.pdf">largely unregulated in the U.S.</a>, and the decision to put in place restrictions will certainly raise objections from both potential parents and IVF providers.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/180211/original/file-20170728-18243-1g5vqx3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/180211/original/file-20170728-18243-1g5vqx3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/180211/original/file-20170728-18243-1g5vqx3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/180211/original/file-20170728-18243-1g5vqx3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/180211/original/file-20170728-18243-1g5vqx3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/180211/original/file-20170728-18243-1g5vqx3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/180211/original/file-20170728-18243-1g5vqx3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/180211/original/file-20170728-18243-1g5vqx3.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">Who should be able to use this technology? And who should decide?</span>
<span class="attribution"><a class="source" href="https://www.flickr.com/photos/j2dread/5595599661">Johnathan D. Anderson</a>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span>
</figcaption>
</figure>
<p>Moreover, there are important questions about cost and access. Right now most assisted reproductive technologies are available only to higher-income individuals. A handful of <a href="http://www.ncsl.org/research/health/insurance-coverage-for-infertility-laws.aspx">states mandate infertility treatment coverage</a>, but it is very limited. How should we regulate access to embryo editing for serious diseases? We are in the midst of a <a href="https://theconversation.com/us/topics/us-health-care-reform-40185">widespread debate</a> about health care, access and cost. If it becomes established and safe, should this technique be part of a basic package of health care services when used to help create a child who does not suffer from a specific genetic problem? What about editing for nonhealth issues or less serious problems – are there fairness concerns if only people with sufficient wealth can access?</p>
<p>So far the promise of genetic engineering for disease eradication has not lived up to its hype. Nor have many other milestones, like the 1996 <a href="https://theconversation.com/20-years-after-dolly-everything-you-always-wanted-to-know-about-the-cloned-sheep-and-what-came-next-72655">cloning of Dolly the sheep</a>, resulted in the feared apocalypse. The announcement of the Oregon study is only the next step in a long line of research. Nonetheless, it is sure to bring many of the issues about embryos, stem cell research, genetic engineering and reproductive technologies back into the spotlight. Now is the time to figure out how we want to see this gene-editing path unfold.</p><img src="https://counter.theconversation.com/content/81732/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jessica Berg 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 news may have come as a surprise, but it probably shouldn’t have. A bioethics expert walks through how big a deal this announcement is – and what we should be considering now.Jessica Berg, Law Dean; Professor of Law; and Professor of Bioethics & Public Health, Case Western Reserve UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/811682017-07-25T00:04:18Z2017-07-25T00:04:18ZThree ways the Charlie Gard case could affect future end-of-life cases globally<p>The tragic <a href="https://www.judiciary.gov.uk/wp-content/uploads/2017/07/gosh-v-gard-24072017.pdf">case of Charlie Gard</a>, the British infant whose parents have just <a href="http://www.abc.net.au/news/2017-07-24/charlie-gard-parents-end-legal-battle-over-treatment/8739588">ended their legal fight</a> to send him to the US for experimental treatment, has captured global attention.</p>
<p>The <a href="http://www.bbc.com/news/health-40554462">case</a> is significant for a number of reasons, both in the huge amount of publicity it has attracted, its progression through several courts, and the number of influential commentators who became involved.</p>
<p>Not only does the case highlight the challenges for <a href="http://www.abc.net.au/news/2017-07-24/could-a-charlie-gard-case-happen-in-australia/8735900">parents, doctors and judges</a> in making end-of-life decisions about critically impaired infants, it is unique in another respect. It highlights the changing role of the wider public in shaping how decisions about medical treatment are made.</p>
<p>Here are three factors from the Charlie Gard case that could influence future cases around the world.</p>
<h2>1. Using social media to mobilise support</h2>
<p>More than any case of this kind, advocates for Charlie Gard have been effective in mobilising support using social media and the internet.</p>
<p>Early on, Charlie’s family set up a <a href="http://www.charliesfight.org">website</a> (with <a href="http://shop.charliesfight.org/">merchandise available</a>), as well as <a href="https://twitter.com/fight4charlie?lang=en">Twitter</a>, <a href="https://www.facebook.com/Charliegardsfight/?fref=ts">Facebook</a> and <a href="https://www.instagram.com/charliesfight/">Instagram</a> accounts to highlight how they disagreed with doctors about their son’s care. The social media campaign was further bolstered by hashtags <a href="https://twitter.com/hashtag/charliesarmy?src=hash">#charliesarmy</a> and <a href="https://twitter.com/hashtag/charliesfight?src=hash">#charliesfight</a> to keep the topic trending.</p>
<p>The campaign, which brought together supporters under the banner of “Charlie’s Army”, attracted support from <a href="https://www.theguardian.com/uk-news/2017/jul/10/charlie-gard-pope-and-trump-biggest-help-in-keeping-him-alive-says-mother">US President Donald Trump, and the Pope</a>.</p>
<p>The online campaign also raised awareness of Charlie’s rare genetic condition, <a href="http://www.telegraph.co.uk/news/0/charlie-gard-mitochondrial-disease-suffers-legal-battle/">mitochondrial DNA depletion syndrome</a>, which in his case, resulted in muscle weakness and irreversible brain damage.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"886569976945156097"}"></div></p>
<p>The social media campaign helped gather support for <a href="http://www.getwestlondon.co.uk/news/west-london-news/charlie-gard-protesters-dubbed-charlies-13270232">several protests</a> about Charlie’s care. We’ve also seen <a href="http://www.smh.com.au/world/baby-charlie-gard-has-a-chance-doctor-tells-court-20170713-gxazg3.html">criticisms of</a>, and <a href="http://www.bbc.com/news/uk-england-london-40691478">death threats against</a>, Charlie’s treating doctors at <a href="http://www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case">Great Ormond Street Hospital</a> in London, again fuelled by social media.</p>
<p>Clearly, Charlie’s case has been played out both in the courts of law and the court of public opinion. The courts were asked to decide upon emotional and ethical issues. Yet, in this case, every aspect of Charlie’s life seems to have been played out through social media. </p>
<hr>
<p><em>Further reading: <a href="https://theconversation.com/charlie-gard-who-is-best-placed-to-decide-his-fate-80771">Charlie Gard: who is best placed to decide his fate?</a></em></p>
<hr>
<p>It’s time to ask ourselves whether matters that ultimately concern life and death, particularly of the most vulnerable and who cannot speak for themselves, be considered more privately. In this light, we may need to reflect on whether a social media campaign really has a place, not only now but in future cases.</p>
<p>In future cases where parents and doctors disagree on treatment decisions, will the Charlie Gard case form a template for how to rally public support? And could a similar approach influence future decisions about broader medical treatment, not just about end-of-life care?</p>
<h2>2. Crowdfunding to pay for unauthorised treatment</h2>
<p>In a novel move for cases of this kind, Charlie Gard’s supporters had <a href="https://www.gofundme.com/please-help-to-save-charlies-life">raised £1.3 million</a> via a GoFundMe <a href="https://theconversation.com/explainer-what-is-crowdfunding-9444">crowdfunding</a> initiative for him to be able to travel to the US for experimental treatment.</p>
<p>His parents and a handful of medical experts believed <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4892756/">nucleoside experimental therapy</a>, while not a cure, could provide a small chance of improving his quality of life. This is a claim Charlie’s treating doctors rejected.</p>
<p>With finite health-care resources, there’s a chance other families of critically ill infants could think of crowdfunding to fund a treatment doctors or the courts consider not in the best interest of the child.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/179369/original/file-20170724-28505-hhdtad.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/179369/original/file-20170724-28505-hhdtad.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=361&fit=crop&dpr=1 600w, https://images.theconversation.com/files/179369/original/file-20170724-28505-hhdtad.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=361&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/179369/original/file-20170724-28505-hhdtad.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=361&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/179369/original/file-20170724-28505-hhdtad.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=453&fit=crop&dpr=1 754w, https://images.theconversation.com/files/179369/original/file-20170724-28505-hhdtad.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=453&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/179369/original/file-20170724-28505-hhdtad.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=453&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The crowdsourcing campaign raised £1.3 million to send Charlie Gard to the US for experimental treatment.</span>
<span class="attribution"><a class="source" href="https://www.gofundme.com/please-help-to-save-charlies-life">Screenshot/gofundme</a></span>
</figcaption>
</figure>
<p>Yet crowdfunding for medical expenses is <a href="https://theconversation.com/explainer-what-is-crowdfunding-9444">not as simple as setting up an account or website</a>. There are processing fees, and other tax and legal implications to consider. </p>
<p>Beyond that, we need to ask ourselves what happens when crowdfunding money runs out and how people choose which campaign to donate to. We also need to consider not only how crowdfunding affects issues of privacy, but also how it affects the wider issues of fair and appropriate access to medical treatment.</p>
<h2>3. Fuelling anti-establishment sentiment</h2>
<p>End-of-life decisions for critically ill infants have traditionally been made privately, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4124260/">in collaboration between doctors and parents</a>. Typically these decisions require an evaluation, among other factors, of the child’s best interests and quality of life. Parents generally tend to listen to and follow the advice of the medical professionals.</p>
<p>In this case, some may see the attempts of Charlie’s parents to overrule the courts, hospital and medical advice as a departure from the traditional <a href="https://stanford.library.sydney.edu.au/entries/paternalism/">paternalistic</a> doctor-patient relationship (sometimes known as “doctor knows best”). </p>
<p>Unlike many others in this situation, Charlie’s parents <a href="http://www.independent.co.uk/news/uk/home-news/charlie-gard-army-high-court-medical-experts-great-ormond-street-hospital-murder-doctors-lying-a7840236.html">had rejected</a> not only the advice of the treating medical team, but have also repeatedly rejected the decisions of the courts, who are assumed to be fulfilling an independent and objective role.</p>
<hr>
<p><em>Further reading: <a href="https://theconversation.com/when-parents-disagree-with-doctors-on-a-childs-treatment-who-should-have-the-final-say-64813">When parents disagree with doctors on a child’s treatment, who should have the final say?</a></em></p>
<hr>
<p>Future cases will demonstrate whether the Charlie Gard case can be regarded as an indicator of a trend away from the medico-legal establishment. But, as some have indicated, “doctor knows best” <a href="http://www.bbc.com/news/uk-40600932">is shifting to</a> “parent knows best”. </p>
<p>Questions of “best interests” and “quality of life” are nuanced and difficult, but to Charlie’s vocal supporters in the court of public opinion, this case has been one of “us” and “them”.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"884184391240626177"}"></div></p>
<p>We don’t yet know how this power shift will play out in future cases. But so far, public debates have been less about Charlie and his individual best interests, and more about the interests of others – be they <a href="http://www.express.co.uk/news/uk/824747/charlie-gard-terminally-ill-baby-us-hospital-free-treatment-donald-trump">political</a>, “sticking it” to the establishment or being heard on social media.</p>
<p>Perhaps, in the future, the courts may want to regain some control in end-of-life cases by enforcing suppression orders (limiting what’s made public about a case) to avoid such a media circus.</p>
<h2>Where to from here?</h2>
<p>It is likely that this will become a seminal case for some of the above reasons. The case will also be discussed to some degree in both Commonwealth and non-Commonwealth jurisdictions, as evidenced by US President Trump’s involvement. </p>
<p>In the meantime, it might be prudent to pause and reflect. Amid all the noise of clicks, hashtags, likes, tweets and protests, we need to go back to the essentials. At the heart of this frenzy is a very ill 11-month-old infant, who was unable to express his wishes. Yet there were millions who thought they could do just that.</p><img src="https://counter.theconversation.com/content/81168/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Neera Bhatia 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 high-profile Charlie Gard case could change the way end-of-life decisions play out around the world.Neera Bhatia, Senior Lecturer in Law, Deakin UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/777592017-06-14T02:23:03Z2017-06-14T02:23:03ZHelping or hacking? Engineers and ethicists must work together on brain-computer interface technology<figure><img src="https://images.theconversation.com/files/173203/original/file-20170609-4841-73vkw2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A subject plays a computer game as part of a neural security experiment at the University of Washington.</span> <span class="attribution"><span class="source">Patrick Bennett</span>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span></figcaption></figure><p>In the 1995 film <a href="http://www.imdb.com/title/tt0112462/">“Batman Forever</a>,” the Riddler used 3-D television to secretly access viewers’ most personal thoughts in his hunt for Batman’s true identity. By 2011, the metrics company <a href="http://www.nielsen.com/us/en/press-room/2011/nielsen-acquires-neurofocus.html">Nielsen had acquired Neurofocus</a> and had created a “consumer neuroscience” division that uses <a href="http://www.nielsen.com/us/en/solutions/capabilities/consumer-neuroscience.html">integrated conscious and unconscious data</a> to track customer decision-making habits. What was once a nefarious scheme in a Hollywood blockbuster seems poised to become a reality.</p>
<p>Recent announcements <a href="https://www.theverge.com/2017/3/27/15077864/elon-musk-neuralink-brain-computer-interface-ai-cyborgs">by Elon Musk</a> <a href="https://techcrunch.com/2017/04/19/facebook-brain-interface/">and Facebook</a> about <a href="https://theconversation.com/melding-mind-and-machine-how-close-are-we-75589">brain-computer interface (BCI) technology</a> are just the latest headlines in an ongoing science-fiction-becomes-reality story.</p>
<p>BCIs use brain signals to control objects in the outside world. They’re a potentially world-changing innovation – imagine being paralyzed but able to “reach” for something with a prosthetic arm <a href="http://www.slate.com/blogs/future_tense/2012/12/21/jan_scheuermann_footage_of_paralyzed_woman_eating_chocolate_with_robotic.html">just by thinking about it</a>. But the revolutionary technology also raises concerns. Here at the University of Washington’s Center for Sensorimotor Neural Engineering (<a href="http://www.csne-erc.org/">CSNE</a>) we and our colleagues are researching BCI technology – and a crucial part of that includes working on issues such as neuroethics and neural security. Ethicists and engineers are working together to understand and quantify risks and develop ways to protect the public now. </p>
<h2>Picking up on P300 signals</h2>
<p>All BCI technology relies on being able to collect information from a brain that a device can then use or act on in some way. There are numerous places from which signals can be recorded, as well as infinite ways the data can be analyzed, so there are many possibilities for how a BCI can be used.</p>
<p>Some BCI researchers zero in on one particular kind of regularly occurring brain signal that alerts us to important changes in our environment. Neuroscientists call these signals “<a href="https://doi.org/10.4103/0972-6748.57865">event-related potentials</a>.” In the lab, they help us identify a reaction to a stimulus.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/172819/original/file-20170607-29557-1ggtcor.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/172819/original/file-20170607-29557-1ggtcor.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/172819/original/file-20170607-29557-1ggtcor.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=417&fit=crop&dpr=1 600w, https://images.theconversation.com/files/172819/original/file-20170607-29557-1ggtcor.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=417&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/172819/original/file-20170607-29557-1ggtcor.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=417&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/172819/original/file-20170607-29557-1ggtcor.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=524&fit=crop&dpr=1 754w, https://images.theconversation.com/files/172819/original/file-20170607-29557-1ggtcor.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=524&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/172819/original/file-20170607-29557-1ggtcor.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=524&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Examples of event-related potentials (ERPs), electrical signals produced by the brain in response to a stimulus.</span>
<span class="attribution"><span class="source">Tamara Bonaci</span>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span>
</figcaption>
</figure>
<p>In particular, we capitalize on one of these specific signals, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2715154/">called the P300</a>. It’s a positive peak of electricity that occurs toward the back of the head about 300 milliseconds after the stimulus is shown. The P300 alerts the rest of your brain to an “oddball” that stands out from the rest of what’s around you.</p>
<p>For example, you don’t stop and stare at each person’s face when you’re searching for your friend at the park. Instead, if we were recording your brain signals as you scanned the crowd, there would be a detectable P300 response when you saw someone who could be your friend. The P300 carries an unconscious message alerting you to something important that deserves attention. These signals are part of a still unknown brain pathway that aids in detection and focusing attention.</p>
<h2>Reading your mind using P300s</h2>
<p>P300s reliably occur any time you notice something rare or disjointed, like when you find the shirt you were looking for in your closet or your car in a parking lot. Researchers can use the P300 in an experimental setting to determine what is important or relevant to you. That’s led to the creation of devices like spellers that allow paralyzed individuals to type using their thoughts, <a href="https://doi.org/10.1016/0013-4694(88)90149-6">one character at a time</a>.</p>
<p>It also can be used to determine what you know, in what’s called a “<a href="https://dx.doi.org/10.3109/00207458808985770">guilty knowledge test</a>.” In the lab, subjects are asked to choose an item to “steal” or hide, and are then shown many images repeatedly of both unrelated and related items. For instance, subjects choose between a watch and a necklace, and are then shown typical items from a jewelry box; a P300 appears when the subject is presented with the image of the item he took.</p>
<p>Everyone’s P300 is unique. In order to know what they’re looking for, researchers need “training” data. These are previously obtained brain signal recordings that researchers are confident contain P300s; they’re then used to calibrate the system. Since the test measures an unconscious neural signal that you don’t even know you have, can you fool it? Maybe, if you <a href="https://doi.org/10.1111/j.1469-8986.2004.00158.x">know that you’re being probed and what the stimuli are</a>.</p>
<p>Techniques like these are still considered unreliable and unproven, and thus U.S. courts have <a href="https://doi.org/10.1176/ps.2007.58.4.460">resisted admitting P300 data as evidence</a>.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/172821/original/file-20170607-25764-pbljrg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/172821/original/file-20170607-25764-pbljrg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/172821/original/file-20170607-25764-pbljrg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/172821/original/file-20170607-25764-pbljrg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/172821/original/file-20170607-25764-pbljrg.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/172821/original/file-20170607-25764-pbljrg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/172821/original/file-20170607-25764-pbljrg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/172821/original/file-20170607-25764-pbljrg.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">For now, most BCI technology relies on somewhat cumbersome EEG hardware that is definitely not stealth.</span>
<span class="attribution"><span class="source">Mark Stone, University of Washington</span>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span>
</figcaption>
</figure>
<p>Imagine that instead of using a P300 signal to solve the mystery of a “stolen” item in the lab, someone used this technology to extract information about what month you were born or which bank you use – without your telling them. Our research group has <a href="https://digital.lib.washington.edu/researchworks/handle/1773/33808">collected data suggesting this is possible</a>. Just using an individual’s brain activity – specifically, their P300 response – we could determine a subject’s preferences for things like favorite coffee brand or favorite sports.</p>
<p>But we could do it only when subject-specific training data were available. What if we could figure out someone’s preferences without previous knowledge of their brain signal patterns? Without the need for training, users could simply put on a device and go, skipping the step of loading a personal training profile or spending time in calibration. Research on trained and untrained devices is the subject of <a href="http://brl.ee.washington.edu/neural-engineering/bci-security/">continuing experiments at the University of Washington</a> <a href="https://perso.uclouvain.be/fstandae/PUBLIS/190.pdf">and elsewhere</a>. </p>
<p>It’s when the technology is able to “read” someone’s mind who isn’t actively cooperating that ethical issues become particularly pressing. After all, we willingly trade bits of our privacy all the time – when we open our mouths to have conversations or use GPS devices that allow companies to collect data about us. But in these cases we consent to sharing what’s in our minds. The difference with next-generation P300 technology under development is that the protection consent gives us may get bypassed altogether.</p>
<p>What if it’s possible to decode what you’re thinking or planning without you even knowing? Will you feel violated? Will you feel a loss of control? Privacy implications may be wide-ranging. Maybe advertisers could know your preferred brands and send you personalized ads – which may be convenient or creepy. Or maybe malicious entities could determine where you bank and your account’s PIN – which would be alarming. </p>
<h2>With great power comes great responsibility</h2>
<p>The potential ability to determine individuals’ preferences and personal information using their own brain signals has spawned a number of difficult but pressing questions: Should we be able to keep our neural signals private? That is, should neural security <a href="https://doi.org/10.1186/s40504-017-0050-1">be a human right</a>? How do we <a href="https://dx.doi.org/10.2139/ssrn.2427564">adequately protect and store all the neural data</a> being recorded for research, and soon for leisure? How do consumers know if any protective or anonymization measures are being made with their neural data? As of now, neural data collected for commercial uses are not subject to the same legal protections covering <a href="https://www.hhs.gov/hipaa/index.html">biomedical research or health care</a>. Should neural data be treated differently?</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/172822/original/file-20170607-25764-qhx5o4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/172822/original/file-20170607-25764-qhx5o4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/172822/original/file-20170607-25764-qhx5o4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/172822/original/file-20170607-25764-qhx5o4.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/172822/original/file-20170607-25764-qhx5o4.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/172822/original/file-20170607-25764-qhx5o4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/172822/original/file-20170607-25764-qhx5o4.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/172822/original/file-20170607-25764-qhx5o4.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">Neuroethicists from the UW Philosophy department discuss issues related to neural implants.</span>
<span class="attribution"><span class="source">Mark Stone, University of Washington</span>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span>
</figcaption>
</figure>
<p>These are the kinds of conundrums that are best addressed by neural engineers and ethicists working together. Putting ethicists in labs alongside engineers – <a href="http://www.csne-erc.org/research/neuroethics">as we have done at the CSNE</a> – is one way to ensure that privacy and security risks of neurotechnology, as well as other ethically important issues, are an active part of the research process instead of an afterthought. For instance, Tim Brown, an ethicist at the CSNE, is “housed” within a neural engineering research lab, allowing him to have daily conversations with researchers about ethical concerns. He’s also easily able to interact with – and, in fact, interview – research subjects about their <a href="http://www.csne-erc.org/engage-enable/post/ethics-cornerstone-neural-engineering-research">ethical concerns about brain research</a>. </p>
<p>There are important ethical and legal lessons to be drawn about technology and privacy from other areas, such as <a href="https://www.genome.gov/27561246/privacy-in-genomics">genetics</a> and <a href="http://www.theneuroethicsblog.com/2011/08/ethical-dimenstions-of-neuromarketing.html">neuromarketing</a>. But there seems to be something important and different about reading neural data. They’re more intimately connected to the mind and who we take ourselves to be. As such, ethical issues raised by BCI demand special attention.</p>
<h2>Working on ethics while tech’s in its infancy</h2>
<p>As we wrestle with how to address these privacy and security issues, there are two features of current P300 technology that will buy us time.</p>
<p>First, most commercial devices available use dry electrodes, which rely solely on skin contact to conduct electrical signals. This technology is prone to a low signal-to-noise ratio, meaning that we can extract only relatively basic forms of information from users. The brain signals we record are known to be highly variable (even for the same person) due to things like electrode movement and the constantly changing nature of brain signals themselves. Second, electrodes are not always in ideal locations to record.</p>
<p>All together, this inherent lack of reliability means that BCI devices are not nearly as ubiquitous today as they may be in the future. As electrode hardware and signal processing continue to improve, it will be easier to continuously use devices like these, and make it easier to extract personal information from an unknowing individual as well. The safest advice would be to not use these devices at all.</p>
<p>The goal should be that the ethical standards and the technology will mature together to ensure future BCI users are confident their privacy is being protected as they use these kinds of devices. It’s a rare opportunity for scientists, engineers, ethicists and eventually regulators to work together to create even better products than were originally dreamed of in science fiction.</p><img src="https://counter.theconversation.com/content/77759/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Eran Klein a member of the Center for Sensorimotor Neural Engineering (CSNE) at the University of Washington which receives funding from the National Science Foundation (NSF).</span></em></p><p class="fine-print"><em><span>Katherine Pratt works for the Electrical Engineering department at the University of Washington in Seattle, and is affiliated with the Center for Sensorimotor Neural Engineering (CSNE). Katherine Pratt receives funding from the National Science Foundation and Technology Policy Lab, and has also previously received support from Google. The CSNE partners with the companies listed at <a href="http://csne-erc.org/content/current-members">http://csne-erc.org/content/current-members</a></span></em></p>BCI devices that read minds and act on intentions can change lives for the better. But they could also be put to nefarious use in the not-too-distant future. Now’s the time to think about risks.Eran Klein, Adjunct Assistant Professor of Neurology at Oregon Health and Sciences University and Affiliate Assistant Professor of Philosophy, University of WashingtonKatherine Pratt, Ph.D. Student in Electrical Engineering, University of WashingtonLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/725192017-02-13T11:32:44Z2017-02-13T11:32:44ZFully-grown pig chimeras are only a few years away – we need to understand where they stand now<figure><img src="https://images.theconversation.com/files/156070/original/image-20170208-17349-1j16jen.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Scientists have made a massive breakthrough.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/cute-piglet-air-hands-female-veterinarian-387527650">Shutterstock</a></span></figcaption></figure><p>If you needed an organ transplant, would you mind if it had been grown in an animal from human stem cells? Or would you do it but deep down find it frighteningly unnatural? This may all sound like science fiction, but scientists recently managed to implant human stem cells <a href="http://www.cell.com/cell/fulltext/S0092-8674(16)31752-4">into a pig embryo</a> – pushing us a step closer to <a href="http://www.americantransplantfoundation.org/about-transplant/facts-and-myths/">such a future</a>. There are also other important applications from such research, such as the study of developmental processes and diseases of many kinds.</p>
<p>We are, at minimum, several steps and several years away from being able to create fully grown <a href="http://news.nationalgeographic.com/2017/01/human-pig-hybrid-embryo-chimera-organs-health-science/">human-animal chimeras</a>. But worries over the ethics of chimera research have been with us since the beginning of the 21st century. Ethicists have begun to map the space of difficult moral questions surrounding this issue. </p>
<p>In a useful recent survey, Robert Streiffer identified <a href="https://plato.stanford.edu/entries/chimeras/">several distinct concerns</a> and discussed whether they were worthy of attention. Many readers will share these concerns, although they leave me fairly cold. One is that creating chimeras is wrong because it violates boundaries between species – it is in some morally problematic way unnatural. Another is that the creation of chimeras will threaten social practices that depend on a strong human-animal distinction, such as the farming of animals for food, and so create moral confusion. Many people also believe that chimeric research will threaten human dignity.</p>
<p>One area of concern that I do find salient and important, however, has to do with the moral status of chimeric beings. As Streiffer also noted, if a chimeric animal’s moral status is enhanced then society must be prepared to deal with it. As an extreme example, consider a chimera with human-like cognitive abilities but without the physical ability to speak. Such a chimera could conceivably be raised in a society that hasn’t thought about how to address this and places no weight on its enhanced cognition. </p>
<p>If enhanced cognitive abilities are a basis for enhanced moral status, this might be ethically problematic. But confronting this problem requires a sophisticated understanding of what “moral status” means and of how chimeric research might enhance this in an animal.</p>
<h2>Upping status</h2>
<p>And it’s not clear that we have a sufficient understanding of this. This is because most accounts of moral status are designed to consider only two things. One is that healthy human beings fully qualify for it – their interests matter morally, and there are strong moral reasons against harming or killing them. The other is that some privileged population – for example babies, foetuses, those with severe cognitive disabilities or non-human animals – is close enough along some relevant dimension to qualify for similar protections. </p>
<p>These things in combination can lead to a lot of confusion. Although each of these marginalised groups present unique concerns, in each case we’re supposed to draw a theoretical connection between them and that of healthy human adults. The idea is usually that these groups demonstrate some capability or property that we find morally significant in our own case, and that in virtue of this the marginalised group deserves moral consideration.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/156357/original/image-20170210-23354-1szrru4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/156357/original/image-20170210-23354-1szrru4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=336&fit=crop&dpr=1 600w, https://images.theconversation.com/files/156357/original/image-20170210-23354-1szrru4.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=336&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/156357/original/image-20170210-23354-1szrru4.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=336&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/156357/original/image-20170210-23354-1szrru4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=423&fit=crop&dpr=1 754w, https://images.theconversation.com/files/156357/original/image-20170210-23354-1szrru4.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=423&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/156357/original/image-20170210-23354-1szrru4.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=423&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Special status for foetuses? Pro Life Rally For Life In Dublin.</span>
<span class="attribution"><span class="source">William Murphy</span>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span>
</figcaption>
</figure>
<p>But healthy human adults are complicated creatures, with a range of morally relevant capacities and characteristics. Healthy human adults are sentient, they enjoy sophisticated moral agency, they are self-conscious and they enjoy rich inner lives full of a range of complicated emotions. They also participate in complicated forms of social interaction, friendship and cooperation. If we wish to extend moral status to some population, for example to foetuses, we will probably pick a subset of these capacities to be able to include them. Or try some alternative way to demonstrate that the population meets similar criteria as healthy human adults. </p>
<p>But what we’re left with is a <a href="https://philpapers.org/rec/DEGHCH">mishmash of accounts of moral status</a>, and of the things that might enhance or diminish it. Moral philosophers have suggested that these range from self-consciousness and sophisticated psychological capacities, to simply the capacity to suffer or to participate in relationships that could fundamentally transform behaviour. Other suggestions include having the genetic basis for moral agency (would human genes in a human/pig chimera count?) or the fact that one might have been or might become a person.</p>
<p>It is unclear how well any of these proposals would relate to the case of chimeras. Our understanding of what kinds of chimeras we may be able to create is still in its infancy. It is unclear whether chimeras will share features with the problem cases that drive much work in ethics on moral status. For example, will growing a human heart or some human neurons in a pig mean that it might have been a person, and is this morally significant? </p>
<p>The current approach to determining moral status is problematic. It is not a great theoretical procedure to develop a new patch each time a theoretical dyke springs a leak. </p>
<p>It may be that what we need to do is to go back to the drawing board with respect to moral status, and to think hard about the kinds of things that underpin our practices and our moral judgements regarding human adults. For difficult cases like the human-animal chimera, ethical thought on moral status may not yet be fit for purpose.</p>
<hr>
<p><em>In conjunction with Oxford University’s <a href="http://blog.practicalethics.ox.ac.uk/">Practical Ethics</a> blog</em></p><img src="https://counter.theconversation.com/content/72519/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Joshua Shepherd receives funding from the Wellcome Trust, award 104347. </span></em></p>What rights should a chimera with human-like cognitive abilities but without the ability to speak have?Joshua Shepherd, Wellcome Trust Research Fellow in Philosophy, University of OxfordLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/690972016-12-01T01:55:26Z2016-12-01T01:55:26ZNeuroscience hasn’t been weaponized – it’s been a tool of war from the start<figure><img src="https://images.theconversation.com/files/148172/original/image-20161130-17791-94aqza.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A discipline neither good nor evil.</span> <span class="attribution"><a class="source" href="https://commons.wikimedia.org/wiki/File:Turning_the_Mind_Inside_Out_Saturday_Evening_Post_24_May_1941_a_detail_1.jpg">Saturday Evening Post/Harris A. Ewing</a></span></figcaption></figure><p>What could once only be imagined in science fiction is now increasingly coming to fruition: <a href="http://www.independent.co.uk/news/science/drones-brain-thoughts-controlled-bci-brain-computer-interface-brain-controlled-interface-a6996781.html">Drones can be flown by human brains’ thoughts</a>. Pharmaceuticals can <a href="http://www.theatlantic.com/health/archive/2014/08/changing-memories-to-treat-ptsd/379223/">help soldiers forget traumatic experiences</a> or produce feelings of trust to encourage <a href="http://www.usnews.com/news/articles/2012/05/15/oxytocin-the-trust-hormone-could-become-new-interrogation-tool">confession in interrogation</a>. DARPA-funded research is working on everything from <a href="http://www.darpa.mil/news-events/2015-01-19">implanting brain chips</a> to “<a href="https://swarmlab.eecs.berkeley.edu/projects/4887/neural-dust-ultrasonic-low-power-solution-chronic-brain-machine-interfaces">neural dust</a>” in an effort to alleviate the effects of traumatic experience in war. Invisible microwave beams produced by military contractors and <a href="https://www.aclu.org/blog/speakeasy/dont-let-militarys-deadly-pain-ray-machine-invade-la-county-jail">tested on U.S. prisoners</a> can produce the sensation of burning at a distance.</p>
<p>What all these techniques and technologies have in common is that they’re recent neuroscientific breakthroughs propelled by military research within a broader context of rapid neuroscientific development, driven by massive government-funded projects in both <a href="https://www.braininitiative.nih.gov/">America</a> and the <a href="https://www.humanbrainproject.eu/">European Union</a>. Even while much about the brain <a href="http://www.nytimes.com/2014/11/11/science/learning-how-little-we-know-about-the-brain.html">remains mysterious</a>, this research has contributed to the rapid and startling development of neuroscientific technology.</p>
<p>And while we might marvel at these developments, it is also undeniably true that this state of affairs raises significant ethical questions. What is the proper role – if any – of neuroscience in national defense or war efforts? <a href="https://newark-rutgers.academia.edu/AlisonHowell">My research</a> addresses these questions in the broader context of looking at how international relations, and specifically warfare, are shaped by scientific and medical expertise and technology.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/_FqcbFHFisQ?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">An Air Force video about military research on the human brain.</span></figcaption>
</figure>
<h2>Weaponization of a peaceable science?</h2>
<p>To understand the relationship between science and war, academic <a href="http://blpress.org/books/mind-wars/">bioethicists</a>, <a href="https://www.wired.com/2012/02/neuroscience-war/">journalists</a> and <a href="https://royalsociety.org/%7E/media/Royal_Society_Content/policy/projects/brain-waves/2012-02-06-BW3.pdf">policy advisors</a> alike typically rely on the framework of “dual use.” Starting from the assumption that the purpose of science is to improve human life, this perspective nevertheless admits that many technologies used in peacetime or to help enhance human capacities can also be harnessed to a second use: harming and degrading human capacities as part of a military arsenal. This framework calls attention to the potential misappropriation of sciences and technologies. By acknowledging potential misuses, it aims to help guide policy to limit such possibilities through practical tools such as weapons conventions.</p>
<p>Key to this framework is the concept of “weaponization.” The dual use idea assumes that we should be concerned with how a once “peaceful” science or technology came to be developed and used in war or national security applications. This process is termed the “<a href="http://doi.org/10.1007/978-94-007-4707-4_144">weaponization of neuroscience</a>.” </p>
<p>The dual use framework and the weaponization concept may offer some immediate potential practical utility. But, <a href="http://doi.org/10.1177/0305829816672930">as I have written more extensively elsewhere</a>, they’re based on a massively misguided notion both of the history of neuroscience and of what is at stake practically and politically.</p>
<h2>Neuroscience’s roots are both civilian and military</h2>
<p>The dual use framework and weaponization concept assume stark war/peace and military/civilian divides. But in fact, the discipline of neuroscience grew equally and simultaneously out of institutions we typically consider civilian and military.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/148175/original/image-20161130-17786-1hbjf91.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/148175/original/image-20161130-17786-1hbjf91.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/148175/original/image-20161130-17786-1hbjf91.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=431&fit=crop&dpr=1 600w, https://images.theconversation.com/files/148175/original/image-20161130-17786-1hbjf91.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=431&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/148175/original/image-20161130-17786-1hbjf91.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=431&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/148175/original/image-20161130-17786-1hbjf91.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=542&fit=crop&dpr=1 754w, https://images.theconversation.com/files/148175/original/image-20161130-17786-1hbjf91.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=542&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/148175/original/image-20161130-17786-1hbjf91.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=542&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">The Walter Reed Army Institute of Research building, site of much early neuroscience work.</span>
<span class="attribution"><a class="source" href="https://www.flickr.com/photos/medicalmuseum/4424656595">National Museum of Health and Medicine</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p><a href="http://doi.org/10.1146/annurev.neuro.23.1.343">Modern neuroscience</a> was established in the post-WWII period. Like many disciplines developed and funded in that era (such as <a href="http://www.hup.harvard.edu/catalog.php?isbn=9780674736825">physics</a>, <a href="http://www.randomhousebooks.com/books/188642/">nuclear medicine</a> and others), the discipline was established through military funding in both “civilian” institutions such as MIT and Harvard and military research institutes such as the <a href="http://wrair-www.army.mil/">Walter Reed Army Institute of Research</a>. That Institute’s Department of Neuropsychiatry <a href="https://www.washingtonpost.com/archive/local/1985/09/13/psychiatrist-david-rioch-dies-at-85/98593033-39cf-47b5-af14-2d25013b73c9/">originated the idea</a> that researchers should study brain anatomy and physiology at the same time as psychology or psychiatry. Neuroscience was <a href="http://dx.doi.org/10.1371/journal.pbio.1001289">funded</a> and <a href="https://www.youtube.com/watch?v=rM6NERF5wP8">shaped</a> to meet the needs of warfare and national security imperatives.</p>
<p>This state of affairs was nothing new: Modern warfare and medical and scientific innovation have <a href="https://doi.org/10.1017/S0260210514000369">long been symbiotic</a>, including the “invention” of <a href="http://dx.doi.org/10.1093/brain/awp339">American clinical neurology</a> through the American Civil War. It’s not possible to say that neuroscience has been “weaponized,” because this presumes a naturally peaceful and nonmilitary origin story that is simply historically inaccurate.</p>
<h2>Simultaneously used for good and ill</h2>
<p>Also, the dual use framework and the concept of weaponization assume a distinct divide between help and harm. People using these concepts are primarily concerned with harmful applications of neuroscience – those that degrade human capacities. Without a doubt, these are of deep concern. Few would deny that we should pay close attention, for instance, to the <a href="http://www.bbc.com/news/world-europe-20067384">use of neuropharmaceuticals</a> to degrade the combat capabilities of enemies or produce interrogation susceptibility, or related developments.</p>
<p>But the stark divide between help and harm elides the fact that many technologies can do both simultaneously.</p>
<p>One example is the current DARPA-funded development of brain-machine interfaces. These technologies seek to connect the brain directly to machine technologies in order to control them remotely. Of course this may be a boon for veterans and soldiers in need of <a href="http://www.darpa.mil/news-events/2013-05-30">better prosthetic devices</a>. But these are the very same technologies (and sometimes the <a href="https://www.washingtonpost.com/news/speaking-of-science/wp/2015/03/03/a-paralyzed-woman-flew-a-f-35-fighter-jet-in-a-simulator-using-only-her-mind/">same experimental subjects</a>) that are being used to pilot drones for potential use in warfare.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/148142/original/image-20161130-17047-1sm1a8m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/148142/original/image-20161130-17047-1sm1a8m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/148142/original/image-20161130-17047-1sm1a8m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/148142/original/image-20161130-17047-1sm1a8m.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/148142/original/image-20161130-17047-1sm1a8m.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/148142/original/image-20161130-17047-1sm1a8m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/148142/original/image-20161130-17047-1sm1a8m.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/148142/original/image-20161130-17047-1sm1a8m.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">‘Virtual Iraq’ exposure therapy can help veterans – and prepare them to return to the battlefield.</span>
<span class="attribution"><a class="source" href="http://archive.defense.gov/homepagephotos/leadphotoimage.aspx?id=10463">Defense Dept. photo by John J. Kruzel</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
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</figure>
<p>By way of a second example, consider military medical and rehabilitative practices. These are assumed to be on the “help” rather than “harm” side of the split. Think, for instance, of <a href="http://doi.org/10.1177/0304375412450842">increasing diagnosis of (mild) traumatic brain injuries in military settings</a>. Treatment of these injuries may do great good in the clinical setting for individuals who receive this care. But these therapies are also part of a system of military medicine aimed at producing war readiness and potential redeployment of soldiers. The good health of soldiers (help) is integral to warfare (harm), suggesting that the help/harm divide is not so stark as the dual use framework assumes.</p>
<p>For all these reasons, it’s not possible to say that neuroscience has been “<a href="http://thebulletin.org/militarization-neuroscience">militarized</a>” or “weaponized.” The dual use framework ignores how embedded neuroscience has always been with war and national defense. In doing so, it leads us to underestimate the political task at hand, both in relation to war and in relation to science. On the side of war, it elides the ethical questions we need to be asking, not only about weaponization, but also about the supposedly benign practices of diagnosis, cure and enhancement. On the side of science, it obscures questions about what research gets funded and praised, and about the opportunity costs of allowing military imperatives to drive scientific inquiry.</p><img src="https://counter.theconversation.com/content/69097/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Alison Howell 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>Maybe you think neuroscience has a peaceable history of benign efforts to improve lives and enhance human capacities. But its origins and development tell a different story – with ethical implications.Alison Howell, Assistant Professor of International Relations, Rutgers University - NewarkLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/690542016-11-23T01:31:06Z2016-11-23T01:31:06ZCryonics: hype, hope or hell?<figure><img src="https://images.theconversation.com/files/146925/original/image-20161122-24533-g9ulf9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Cryonics has gone from the world of sci-fi movies to the law courts for the family of one 14-year-old girl.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/448556179?src=5Y-z2JgrWhY3xks5CRFRMg-1-7&id=448556179&size=medium_jpg">from www.shutterstock.com</a></span></figcaption></figure><p>A 14-year-old dying girl has won the right to have her body cryonically preserved immediately after she died, according to a recent UK <a href="http://www.bailii.org/ew/cases/EWHC/Fam/2016/2859.html">High Court decision</a>.</p>
<p>The girl, known as JS, hoped that sometime in the future, when doctors found a cure for her cancer, she might be brought back to life. She had spent several months researching the science of cryonics and the judge had no doubt that she had sound capacity when making her decision.</p>
<p>The judge noted that under the UK’s <a href="http://www.legislation.gov.uk/ukpga/2004/30/contents">Human Tissue Act</a> cryonics is not illegal. However, it is unregulated. The closest the act comes to cryonics is regulating the freezing of sperm and embryos, in the form of cryopreservation. The judge did, however, acknowledge the need for new legislation relating to cryonics.</p>
<p>This case has received a huge amount of <a href="https://www.theguardian.com/science/2016/nov/18/teenage-girls-wish-for-preservation-after-death-agreed-to-by-court">public attention</a>.</p>
<p>But how realistic is cryonics’ chance of success? Is it a nonsensical waste of money and resources, selling snake oil for hope in dying patients? Or is it the new frontier of modern medical science, the path to post-humanism?</p>
<h2>What is cryonics?</h2>
<p>Cryonics involves freezing the body to preserve it immediately or very soon after death. The intention is to re-animate the body in the future, when doctors find a cure for the disease that caused death in the first place.</p>
<p>The general term cryogenics relates to the effects of low temperatures on materials. However, in this latest case, the judge referred to the practice of cryonics.</p>
<p>When a dead body is cryonically preserved, it is packed with ice and injected with anticoagulants, a treatment to stop blood from clotting. The body is then transported to one of <a href="http://www.cryonics.org/">three</a> <a href="http://www.alcor.org">cryonic</a> <a href="http://www.kriorus.com/en">centres</a> in the world.</p>
<p>There, in a process known as vitrification, the body is drained of its blood, which is then replaced with chemicals and anti-freeze. The body is placed in a sleeping bag and housed in a tank of liquid nitrogen at -196°C. The US company Alcor, for example, advertises cryonic preservation for the whole body costing about US$200,000 all up; preserving just the brain is cheaper, at around US$80,000. With some companies, people can pay with their life insurance. </p>
<p>The premise of cryonics is based on a possibility rather than a probability of success. There is no scientific evidence to suggest that it is possible to revive a person back to a living state. </p>
<p>Cryobiologists hope that with future technology, including nanotechnology, they will be able to <a href="http://www.bbc.com/news/health-38019392">repair cells and tissues</a> that are damaged during the freezing process. But they’ve not been successful yet.</p>
<h2>Is cryonics ethical?</h2>
<p>There are <a href="https://www.ncbi.nlm.nih.gov/pubmed/19788649">some arguments</a> in favour of cryonics, the simplest of which is one of free will and choice. As long as people are informed of the very small chance of success of future re-animation, and they are not being coerced, then their choice is an expression of their autonomy about how they wish to direct the disposal of their bodies and resources after death. </p>
<p>In this light, choosing cryonics can be seen as no different to choosing cremation or burial, albeit a much more expensive option.</p>
<p>However, this case raises several other ethical and problematic concerns. There is the issue of <a href="https://www.theguardian.com/science/2016/nov/18/top-uk-scientist-calls-for-restrictions-on-marketing-cryonics">potentially exploiting</a> vulnerable people. Some might argue vulnerable people are trading hype for hope. </p>
<p>But if we were to replace the science of cryonics with the promises of religious or spiritual healers made at the bedside of the dying – of earlier access to “eternal life” in return for large payments known as indulgences – would this be so different?</p>
<h2>Serious regulatory problems ahead</h2>
<p>Legal and ethical issues aside, there are other serious issues to consider.</p>
<p>How can dying people have confidence in the ability of a company to keep their remains intact? If the cryonic company were to cease operating because of financial difficulties, what would happen to the frozen body?</p>
<p>Although highly unlikely to work, cryonics if successful might harm people. Depending on the length of time they were preserved, what would they wake up to? They would have no living family, social or support networks. People would be reanimated into a world that has radically changed, with little or very few resources to support them.</p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/146923/original/image-20161122-24569-1jqcaoj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/146923/original/image-20161122-24569-1jqcaoj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/146923/original/image-20161122-24569-1jqcaoj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=760&fit=crop&dpr=1 600w, https://images.theconversation.com/files/146923/original/image-20161122-24569-1jqcaoj.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=760&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/146923/original/image-20161122-24569-1jqcaoj.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=760&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/146923/original/image-20161122-24569-1jqcaoj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=956&fit=crop&dpr=1 754w, https://images.theconversation.com/files/146923/original/image-20161122-24569-1jqcaoj.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=956&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/146923/original/image-20161122-24569-1jqcaoj.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=956&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 type of world would the girl at the centre of the latest court case wake up to?</span>
<span class="attribution"><a class="source" href="http://n.sinaimg.cn/translate/20161119/rLIt-fxxxauy0480201.jpg">Daily Mirror</a></span>
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</figure>
<p>In the case of JS, if she is re-animated in the future, who would act as her parent or guardian? Assuming the company is able to trace any family descendants, would they consent to looking after her needs? Would JS consent to being placed in their care? These are all unanswered questions with no immediate answers. </p>
<p>The cryonic process might work, but imperfectly. During the process of re-animation, there may be some brain damage. That would mean rather than waking up as you, you might be unconscious or trapped in some disordered, uncontrollable painful stream of consciousness. Companies must be required to test the success of their product; it remains to be seen what the markers of success of re-animation are.</p>
<p>It might be heaven but it might also be hell. The key issue is that people must be made aware of the risks as well as the benefits, and are not exploited.</p>
<p>Most troubling are the questions of natural justice. How long should people live? What is a fair innings? A life of 80 years, 100 years, 500 years? Do we have an obligation to die at some point and turn the world over to the next generation, instead of hanging around indefinitely? This is fast becoming an unavoidable question not only because of cryonics, but also because of the prospect of gene editing and regenerative medicine to prolong life.</p>
<p>Cryonics raises issues about the meaning of life and the definition of death. If someone was frozen before their heart stopped, would they be dead or in a state of suspended animation? Freezing might be an attractive alternative to conventional euthanasia.</p>
<h2>Could it happen in Australia?</h2>
<p>As early as 2017, New South Wales might see the launch of its first not-for-profit <a href="http://cryonics.org.au/">cryonic centre</a> that hopes to also act a self-regulatory body for the cryonics industry in Australia.</p>
<p>The sad and worrying part of this is that the case of JS might influence some desperate parents whose children are suffering incurable diseases to consider cryonics as a last chance of hope.</p>
<p>However, without any regulation or certainty in the law, this would be a disaster. If the cryonic process is not successful for JS or others, then at least it seems like a considerable waste of money. If it misfires, it could be an unparalleled disaster for the person or society.</p>
<p>If it is successful, the lack of any regulation (now or in the future) might mean that it is effectively like placing a person in a time-capsule to be woken at some stage in the future, with no guarantees about what that future looks like – technologically, materially, or socially.</p>
<p>It might not only be a hell for the individual – it might be a hell for the next generation, who are left to decide and care for “out of date” members of a previous generation.</p><img src="https://counter.theconversation.com/content/69054/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Julian Savulescu receives funding from the Oxford Martin School, Wellcome Trust and Uehiro Foundation on Ethics and Education. Member of Global Futures Council and NeoHumanitas Advisory Board.</span></em></p><p class="fine-print"><em><span>Neera Bhatia 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>A UK court has allowed a 14-year-old girl’s body to be frozen until doctors find a cure for the cancer that killed her. Is this latest example of cryogenics hope, hype or hell?Neera Bhatia, Senior Lecturer in Law, Deakin UniversityJulian Savulescu, Sir Louis Matheson Distinguishing Visiting Professor at Monash University, Uehiro Professor of Practical Ethics, University of OxfordLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/648132016-09-07T05:18:55Z2016-09-07T05:18:55ZWhen parents disagree with doctors on a child’s treatment, who should have the final say?<figure><img src="https://images.theconversation.com/files/136832/original/image-20160907-25272-18lt80o.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Parents’ role as medical decision-makers is sometimes questioned when they don't choose the recommended treatment for their child.</span> <span class="attribution"><span class="source">from shutterstock.com</span></span></figcaption></figure><p>Doctors and parents sometimes disagree about a child’s medical treatment. As the recent <a href="http://www.abc.net.au/news/2016-08-25/oshin-kiszko-cancer-battle-returns-to-court/7785198">case of six-year-old boy Oshin Kiszko</a> highlights, some disagreements between doctors and parents can’t be resolved by further information and discussion.</p>
<p>Oshin has brain cancer. His doctors believe he should receive treatment aimed at curing his disease, while Oshin’s parents believe the potential benefits of treatment don’t justify side-effects and other negative outcomes for their son, such as the possibility of long-term health issues.</p>
<p>They want Oshin to receive only palliative care to ensure his comfort in the remaining months of his life. In March, Western Australia’s Family Court <a href="https://www.theguardian.com/australia-news/2016/apr/11/parents-defend-attempt-to-stop-son-receiving-chemotherapy-for-brain-tumour">mandated Oshin be given</a> chemotherapy. The <a href="http://www.austlii.edu.au/au/cases/wa/FCWA/2016/75.html">most recent judgement</a>, after another two court cases, supports a palliative pathway for Oshin as his chance of a cure has decreased.</p>
<p>Oshin’s case is unique. Not all disagreements between doctors and parents reach court. Many are resolved in the hospital and many do not involve life-threatening conditions. In our <a href="http://www.federationpress.com.au/bookstore/book.asp?isbn=9781760020590">recent research project</a>, we investigated types of conflicts that can arise between doctors and parents in a paediatric hospital and the ethics of these situations. </p>
<p>We developed an approach called the “<a href="http://cet.sagepub.com/content/11/1/1">zone of parental discretion</a>” to assist doctors in deciding whether a parental choice should be overridden. This is a tool that holds it is ethical for doctors to accept a treatment option parents want, providing it is good enough, rather than insisting on the best possible treatment.</p>
<h2>What’s in the best interests?</h2>
<p>Parents are the default <a href="http://link.springer.com/article/10.1007/s11017-012-9219-z">medical decision-makers for their children</a> for many ethically important reasons. Usually, parents know their children best and this knowledge – alongside the clinical expertise of doctors – is important in understanding how their child may experience a particular medical treatment. Parents also bear the primary burden of the medical decisions made for their children, caring for them in the long term. </p>
<p>But the parental right to make medical decisions is not unlimited. Their decision-making role is sometimes questioned when they don’t agree with the recommended treatment for their child. There are many ways in which parents may do this.</p>
<p>They might, for example, <a href="http://www.federationpress.com.au/bookstore/book.asp?isbn=9781760020590">decline diagnostic testing</a> they perceive as unnecessary. Others might refuse aspects of physiotherapy they see as distressing for the child, such as painful stretching. To avoid blood transfusion for religious reasons, parents sometimes prefer a different, <a href="http://link.springer.com/article/10.1007%2Fs11673-015-9643-7">less-effective form of surgery</a> to that recommended by the doctors. </p>
<p>In one case, parents declined artificial <a href="http://onlinelibrary.wiley.com/doi/10.1111/j.1440-1754.2004.00369.x/abstract">feeding for an undernourished child with a disability</a>, preferring the child remained lighter for lifting. And in other instances, parents of children with cancer <a href="http://www.ncbi.nlm.nih.gov/pubmed/21951447">have refused conventional treatment</a> in favour of alternative therapies. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/136837/original/image-20160907-25272-1dtk6v7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/136837/original/image-20160907-25272-1dtk6v7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/136837/original/image-20160907-25272-1dtk6v7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/136837/original/image-20160907-25272-1dtk6v7.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/136837/original/image-20160907-25272-1dtk6v7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=501&fit=crop&dpr=1 754w, https://images.theconversation.com/files/136837/original/image-20160907-25272-1dtk6v7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=501&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/136837/original/image-20160907-25272-1dtk6v7.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=501&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Parental decision-making often involves weighing up the interests of different family members.</span>
<span class="attribution"><span class="source">from shutterstock.com</span></span>
</figcaption>
</figure>
<p>Traditionally, clinicians have thought in terms of the child’s best interests when deciding how to respond when parents disagree with their recommendations. Acting in a child’s best interests means doing the thing <a href="http://www.cambridge.org/us/academic/subjects/philosophy/political-philosophy/deciding-others-ethics-surrogate-decision-making">that will have the best possible outcome</a> for him or her. There are two main problems with this approach. </p>
<p>First, a child’s well-being is made up of different elements, such as being free from pain, having a long lifespan, having meaningful relationships and being able to play. There is no straightforward way of calculating well-being and comparing it across treatment options to identify which would be best. And there are often several possible courses of action, each of which would benefit the child in different ways.</p>
<p>Second, the best interests approach may not adequately acknowledge parental autonomy. Parental decision-making often involves weighing up the interests of different family members – which are <a href="https://global.oup.com/academic/product/children-families-and-health-care-decision-making-9780198237631?cc=au&lang=en&">ethically appropriate considerations</a> – and parents may be choosing against the best possible outcome for a particular child in order to care for the family as a whole.</p>
<p>When there is an entrenched disagreement between doctors and parents, focusing only on whether the parents are choosing in the child’s best interests is ethically problematic. Doctors should balance the child’s well-being and the parents’ autonomy by accepting choices that may be sub-optimal for the child, as long as they are not harmful.</p>
<h2>Striking the right balance</h2>
<p>Parents refusing treatment for their child is <a href="http://jme.bmj.com/content/early/2016/06/17/medethics-2015-103025.abstract">one type of situation</a> for which doctors seek clinical ethics advice in paediatric hospitals. </p>
<p>Although clinical ethics support services are widespread and longstanding in the United States and United Kingdom, in Australia they are in their infancy. Over the past decade, clinical ethics support <a href="https://www.mja.com.au/journal/2015/202/11/value-clinical-ethics-support-australian-health-care">has been established at a few large metropolitan hospitals</a> and more hospitals are working to make these services available to their staff.</p>
<p>We know that some clinical ethicists find the “<a href="http://cet.sagepub.com/content/11/1/1">zone of parental discretion</a>” idea helpful when working through issues of disagreement about a child’s treatment. This approach focuses on the potential harmfulness of the parents’ decision rather than trying to identify and insist on the option in the child’s best interests.</p>
<p>There are some parental choices that do not optimise the child’s well-being but will not harm the child. For example, the parents’ preferred form of surgery may not be the best available, but may still be very likely to effectively treat the child’s condition. Such decisions fall within the boundary of the parents’ discretion and should not be overridden. </p>
<p>The outer boundary of the zone of parental discretion is harm to the child. Parents are not ethically entitled to choose options that may harm the child. For example, if parents are refusing physiotherapy necessary to ensure their child will walk again, this choice is outside the zone of parental discretion and should be overriden.</p>
<p>Thinking about situations of deep disagreement in this way enables clinicians to respect and balance the two important values of parental autonomy and children’s well-being. </p>
<p>The zone of parental discretion is a conceptual tool, suited both to formal clinical ethics case discussions and more informal reflection and decision-making. By expanding our thinking beyond only “best interests”, we give clinicians more helpful ways of working ethically through these very difficult situations.</p><img src="https://counter.theconversation.com/content/64813/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Rosalind McDougall receives funding from the Australian Research Council. She is a co-convenor of the Australasian Clinical Ethics Network and a member of the Children's Bioethics Centre. </span></em></p>It is ethical for doctors to accept a treatment option parents want – providing it is good enough – rather than insisting on what they believe is the best possible treatment for the child.Rosalind McDougall, Research Fellow in Ethics, The University of MelbourneLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/632462016-08-02T01:22:15Z2016-08-02T01:22:15ZThe future of genetic enhancement is not in the West<p>Would you want to alter your future children’s genes to make them smarter, stronger or better-looking? As the state of the science brings prospects like these closer to reality, an <a href="https://theconversation.com/search?q=human+enhancement">international debate</a> has been raging over the ethics of enhancing human capacities with biotechnologies such as so-called smart pills, brain implants and gene editing. This discussion has only intensified in the past year with the advent of the <a href="http://www.neb.sg/tools-and-resources/feature-articles/crispr-cas9-and-targeted-genome-editing-a-new-era-in-molecular-biology">CRISPR-cas9 gene editing tool</a>, which raises the specter of tinkering with our DNA to improve traits like intelligence, athleticism and even moral reasoning.</p>
<p>So are we on the brink of a brave new world of genetically enhanced humanity? Perhaps. And there’s an interesting wrinkle: It’s reasonable to believe that any seismic shift toward genetic enhancement will not be centered in Western countries like the U.S. or the U.K., where many modern technologies are pioneered. Instead, genetic enhancement is more likely to emerge out of China.</p>
<h2>Attitudes toward enhancement</h2>
<p><a href="http://www.geneticsandsociety.org/article.php?id=401#igm">Numerous surveys</a> among Western populations have found significant opposition to many forms of human enhancement. For example, a recent <a href="http://www.pewinternet.org/2016/07/26/u-s-public-wary-of-biomedical-technologies-to-enhance-human-abilities/">Pew study</a> of 4,726 Americans found that most would not want to use a brain chip to improve their memory, and a plurality view such interventions as morally unacceptable.</p>
<p><a href="http://www.pewinternet.org/2016/07/26/u-s-public-wary-of-biomedical-technologies-to-enhance-human-abilities/ps_2016-07-26_human-enhancement-survey_0-01/"><img width="415" height="413" src="http://www.pewinternet.org/files/2016/07/PS_2016.07.26_Human-Enhancement-Survey_0-01.png" class="attachment-large size-large" alt="Public expresses more worry than enthusiasm about each of these potential human enhancements."></a></p>
<p>A <a href="http://dx.doi.org/10.1177/0963662514566748">broader review of public opinion studies</a> found significant opposition in countries like Germany, the U.S. and the U.K. to selecting the best embryos for implantation based on nonmedical traits like appearance or intelligence. There is <a href="https://www.statnews.com/2016/02/11/stat-harvard-poll-gene-editing/">even less support</a> for editing genes directly to improve traits in so-called designer babies.</p>
<p>Opposition to enhancement, especially genetic enhancement, has several sources. The above-mentioned Pew poll found that safety is a big concern – in line with experts who say that tinkering with the human genome <a href="http://doi.org/10.1038/nbt.3227">carries significant risks</a>. These risks may be accepted when treating medical conditions, but less so for enhancing nonmedical traits like intelligence and appearance. At the same time, ethical objections often arise. Scientists can be seen as “playing God” and tampering with nature. There are also worries about inequality, creating a new generation of enhanced individuals who are heavily advantaged over others. “<a href="https://www.harpercollins.com/9780061767647/brave-new-world">Brave New World</a>” is a dystopia, after all.</p>
<p>However, those studies have focused on Western attitudes. There has been much less polling in non-Western countries. There is <a href="http://2012.igem.org/wiki/images/7/77/ENGLISH.pdf">some evidence that in Japan</a> there is similar opposition to enhancement as in the West. Other countries, such as China and India, are <a href="http://www.eubios.info/BFP.htm">more positive</a> toward enhancement. In China, this may be linked to more <a href="http://www.eubios.info/Papers/yousheg.htm">generally approving attitudes</a> toward old-fashioned eugenics programs such as selective abortion of fetuses with severe genetic disorders, though more research is needed to fully explain the difference. This has led Darryl Macer of the Eubios Ethics Institute to posit that <a href="http://www.link.springer.com/article/10.1007/s10728-012-0230-3">Asia will be at the forefront</a> of expansion of human enhancement.</p>
<h2>Restrictions on gene editing</h2>
<p>In the meantime, the biggest barrier to genetic enhancement will be broader statutes banning gene editing. <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4251934/figure/Fig3/">A recent study</a> found bans on germline genetic modification – that is, those that are passed on to descendants – are in effect throughout Europe, Canada and Australia. China, India and other non-Western countries, however, have laxer regulatory regimes – restrictions, if they exist, are often in the form of guidelines rather than statutes.</p>
<p>The U.S. may appear to be an exception to this trend. It lacks legal restriction of gene editing; however, <a href="https://theconversation.com/why-treat-gene-editing-differently-in-two-types-of-human-cells-51843">federal funding of germline gene editing</a> research is prohibited. Because <a href="http://doi.org/10.1534/genetics.115.179523">most geneticists rely on government grants</a> for their research, this acts as a significant restriction on germline editing studies.</p>
<p>By contrast, it was <a href="http://doi.org/10.1126/science.aab2547">Chinese government funding</a> that led China to be the <a href="http://dx.doi.org/10.1038/nature.2015.17378">first to edit the genes of human embryos</a> using the CRISPR-cas9 tool in 2015. China has also been leading the way in using CRISPR-cas9 for <a href="http://edition.cnn.com/2016/07/21/health/chinese-scientists-human-gene-crispr-cas9/">non-germline genetic modifications</a> of human tissue cells for use in treatment of cancer patients.</p>
<p>There are, then, two primary factors contributing to emergence of genetic enhancement technologies – research to develop the technologies and popular opinion to support their deployment. In both areas, Western countries are well behind China.</p>
<h2>What makes China a probable petri dish</h2>
<p>A further, more political factor may be at play. Western democracies are, by design, <a href="http://doi.org/10.1177/106591290305600103">sensitive to popular opinion</a>. Elected politicians will be less likely to fund controversial projects, and more likely to restrict them. By contrast, countries like China that lack direct democratic systems are thereby less sensitive to opinion, and officials can play an outsize role in <a href="https://www.brookings.edu/opinions/chinese-public-opinion-shaping-chinas-foreign-policy-or-shaped-by-it/">shaping public opinion</a> to align with government priorities. This would include residual opposition to human enhancement, even if it were present. International norms are arguably emerging against genetic enhancement, but in other arenas China has proven <a href="https://www.theguardian.com/world/2016/jul/12/philippines-wins-south-china-sea-case-against-china">willing to reject international norms</a> in order to promote its own interests.</p>
<p>Indeed, if we set ethical and safety objections aside, genetic enhancement has the potential to bring about significant national advantages. Even marginal increases in intelligence via gene editing could have <a href="http://dx.doi.org/10.1007/s10887-006-7407-2">significant effects</a> on a nation’s economic growth. <a href="https://www.sciencedaily.com/releases/2013/09/130925112343.htm">Certain genes</a> could give some athletes an edge in intense international competitions. <a href="http://dx.doi.org/10.1192/bjp.bp.110.086991">Other genes</a> may have an effect on violent tendencies, suggesting genetic engineering could reduce crime rates.</p>
<p>Many of these potential benefits of enhancement are speculative, but as research advances they may move into the realm of reality. If further studies bear out the reliability of gene editing in improving such traits, China is well-poised to become a leader in the area of human enhancement.</p>
<h2>Does this matter?</h2>
<p>Aside from a preoccupation with <a href="http://www.regnery.com/books/a-nation-like-no-other/">being the best in everything</a>, is there reason for Westerners to be concerned by the likelihood that genetic enhancement is apt to emerge out of China?</p>
<p>If the critics are correct that human enhancement is unethical, dangerous or both, then yes, emergence in China would be worrying. From this critical perspective, the Chinese people would be subject to an unethical and dangerous intervention – a cause for international concern. Given <a href="https://www.amnesty.org/en/countries/asia-and-the-pacific/china/report-china/">China’s human rights record</a> in other areas, it is questionable whether international pressure would have much effect. In turn, enhancement of its population may make China more competitive on the world stage. An unenviable dilemma for opponents of enhancement could emerge – fail to enhance and fall behind, or enhance and suffer the moral and physical consequences.</p>
<p>Conversely, if one believes that human enhancement is actually desirable, this trend should be welcomed. As Western governments hem and haw, delaying development of potentially great advances for humanity, China leads the way forward. Their increased competitiveness, in turn, would pressure Western countries to relax restrictions and thereby allow humanity as a whole to progress – becoming healthier, more productive and generally capable.</p>
<p>Either way, this trend is an important development. We will see if it is sustained – public opinion in the U.S. and other countries could shift, or funding could dry up in China. But for now, it appears that China holds the future of genetic enhancement in its hands.</p><img src="https://counter.theconversation.com/content/63246/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>Regulations, funding and public opinion around genetically enhancing future generations vary from country to country. Here’s why China may be poised to be the pioneer.G. Owen Schaefer, Research Fellow in Biomedical Ethics, National University of SingaporeLicensed as Creative Commons – attribution, no derivatives.