tag:theconversation.com,2011:/fr/topics/research-ethics-2155/articles
Research ethics – The Conversation
2024-02-12T14:14:08Z
tag:theconversation.com,2011:article/221767
2024-02-12T14:14:08Z
2024-02-12T14:14:08Z
The San people of southern Africa: where ethics codes for researching indigenous people could fail them
<p>There is a long and often complicated history of researchers studying Indigenous people. In 1999, the education scholar Linda Tuhiwai-Smith, in her book <a href="https://www.google.nl/books/edition/Decolonizing_Methodologies/Nad7afStdr8C?hl=en&gbpv=0">Decolonizing Methodologies: Research and Indigenous Peoples</a>, emphasised the colonial character of much research. She warned that it</p>
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<p>brings with it a new wave of exploration, discovery, exploitation and appropriation.</p>
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<p>Well into the <a href="https://www.google.nl/books/edition/Anthropology_and_the_Bushman/bUUHEAAAQBAJ?hl=en&gbpv=0;%20https://www.google.nl/books/edition/The_Bushman_Myth/BPZKDwAAQBAJ?hl=en&gbpv=0;%20https://www.google.nl/books/edition/Ethnologists_in_Camouflage/qGhezwEACAAJ?hl=nl">20th century</a>, researchers depicted groups like the Indigenous San of southern Africa in a racist fashion, fixating on their physical characteristics and writing of their “savage” or “primitive” state. </p>
<p>Historically, many researchers did not care about their study participants’ consent or agency, or how they could benefit from the research, for instance through improving their position in society. </p>
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Read more:
<a href="https://theconversation.com/why-im-righting-the-wrongs-of-my-early-research-and-sharing-my-scientific-data-with-local-communities-191713">Why I'm righting the wrongs of my early research and sharing my scientific data with local communities </a>
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<p>This has gradually shifted over the past 50 years. Global organisations such as the Ethical Research Partnership <a href="https://trust-project.eu/">TRUST</a>, the <a href="https://americananthro.org/about/policies/statement-on-ethics/">American Anthropological Association</a> and most, if not all, credible academic institutions, have created ethical rules and guidelines to protect vulnerable populations from exploitation and promote their role in research.</p>
<p>But, as I and a group of fellow ethnographers, together with <a href="https://www.britannica.com/topic/San">San people</a> from all over southern Africa, show in <a href="https://www.nature.com/articles/s41559-023-02101-0">a recent paper</a>, such ethical guidelines have flaws. </p>
<p>Today there are <a href="https://peabody.harvard.edu/video-traces-and-tracks-journeys-san#:%7E:text=But%20just%20to%20give%20you,%2C%20Botswana%2C%20and%20South%20Africa.">about 130,000 San people</a> in Angola, Botswana, <a href="https://whc.unesco.org/en/tentativelists/6096/">Namibia</a>, South Africa and Zimbabwe. They were historically nomadic hunter gatherers; in the past century or so their lives have become more settled, based on agriculture and wage labour.</p>
<p>The pitfalls we identified in the guidelines manifest mainly in three ways: by oppressing vulnerable groups; by being ambiguous about potential benefits to the participants; and by being difficult to follow in practice.</p>
<h2>Three issues</h2>
<p>There are several reasons why ethical conduct in scientific research is so important. Ethical rules are there to prevent what’s known as <a href="https://www.nature.com/articles/d41586-022-01423-6">“ethics dumping”</a>, in which unethical research practices are used in lower-income countries that would not normally be allowed elsewhere. They also guard against <a href="https://www.nature.com/articles/d41586-022-01423-6">“helicopter research”</a>, when scientists from high-income countries conduct their research without involving local scientists or communities.</p>
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Read more:
<a href="https://theconversation.com/african-ubuntu-can-deepen-how-research-is-done-190076">African ubuntu can deepen how research is done</a>
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<p>In 2017 a <a href="https://trust-project.eu/wp-content/uploads/2017/03/San-Code-of-RESEARCH-Ethics-Booklet-final.pdf">code of conduct</a> was created by academics and San leaders working with and for the South African San Institute, the South African San Council and TRUST. The <a href="https://www.nature.com/articles/s41559-023-02101-0">paper</a> discussed in this article, as well as <a href="https://www.liverpooluniversitypress.co.uk/doi/10.3828/hgr.2023.4">one other</a>, analysed problems with this code and similar instruments, and individual contracts unique to a particular piece of research.</p>
<p>These were:</p>
<p><strong>1. Oppression of opinions:</strong> Authorities (often NGOs) sometimes want to push their agenda by keeping unwelcome ideas out of the research. In South Africa, a colleague of mine encountered dubious gatekeepers who claimed to represent the community she hoped to study and who wanted to dictate whom she could interview.</p>
<p>An instrument intended to promote ethical research was used to exclude particular people, or their ideas. </p>
<p><strong>2. An over-emphasis on immediate benefits:</strong> Most codes of conduct and contracts include a clause that research must be “beneficial”. This ignores the essence of what most scientific research is: fundamental and not applied. Fundamental knowledge is not immediately practical but it is crucial to make research potentially beneficial. </p>
<p>I have worked on <a href="https://www.liverpooluniversitypress.co.uk/doi/10.3197/np.2019.230104">research</a> about a land claim by the San in northern Namibia. Knowledge similar to the sort reflected in my research <a href="https://doi.org/10.3366/ajicl.2020.0339">has helped San groups</a> in other parts of southern Africa <a href="https://www.berghahnbooks.com/title/BieseleJu/1000">regain or retain land</a>. Will my research do the same? I have no idea, because that takes time – the research doesn’t instantly benefit the participants.</p>
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Read more:
<a href="https://theconversation.com/five-steps-every-researcher-should-take-to-ensure-participants-are-not-harmed-and-are-fully-heard-191430">Five steps every researcher should take to ensure participants are not harmed and are fully heard</a>
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<p>A focus on benefits also ignores different interests and perceptions within communities. A benefit for some may be detrimental to others. For instance, <a href="https://www.researchgate.net/publication/280233612_Local_impacts_of_community-based_tourism_in_southern_Africa">research</a> can support wildlife management and the creation of tourism jobs for some. But these activities may constrain other livelihoods in the same community. In a <a href="https://journals.lww.com/coas/fulltext/2017/15020/ju__hoansi_lodging_in_a_namibian_conservancy_.2.aspx">Namibian case study</a>, some San complained about restrictions on hunting, small-scale farming, or keeping livestock. </p>
<p><strong>3. Practical limitations:</strong> In southern Africa it is often unclear in advance whom you need to contact to discuss and sign something, and what the legal status of codes and contracts is. In our experiences, e-mails often go unanswered. Many local San do not even know – or, in some cases, care – that these instruments exist. For most, researchers’ needs and aims are not a priority in their ordinary lives. </p>
<p>In such cases research codes and contracts mainly legitimise the researchers’ and gatekeepers’ role in research, but not necessarily that of the people being studied. </p>
<p>This is not an exhaustive list of potential issues. Others include the imposition of a red tape culture, illiteracy among participants and a lack of clear consequences if researchers behave unethically even after signing a contract.</p>
<h2>Paper is no panacea</h2>
<p>We are not opposed to instruments that can empower research participants, but they are not a panacea. Researchers need to scrutinise such codes’ inherent and complex challenges. They also need to put collaboration at the heart of their work.</p>
<p>Examples of such scrutiny and collaboration already exist. Some San groups, such as the <a href="https://anadjeh.wordpress.com/">||Ana-Djeh San Trust</a>, have created initiatives to increase their participation in research, including community training to raise awareness about research. In such cases they like to collaborate with researchers they trust, normally because they have been in contact with them for many years already. Such trust is at the heart of good collaborations and is, we would argue, much more important than paper agreements.</p><img src="https://counter.theconversation.com/content/221767/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Stasja Koot 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>
There are several reasons why ethical conduct in scientific research is so important.
Stasja Koot, Assistant Professor, Wageningen University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/215942
2023-12-07T13:26:48Z
2023-12-07T13:26:48Z
When research study materials don’t speak their participants’ language, data can get lost in translation
<figure><img src="https://images.theconversation.com/files/563460/original/file-20231204-23-ka52z2.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C2032%2C1462&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Some approaches to translation are more true to the aims of the text than others.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/illustration/international-communication-translation-royalty-free-illustration/1150757275">arthobbit/iStock via Getty Images Plus</a></span></figcaption></figure><p>Imagine your mother has cancer. You just heard about a promising new experimental treatment and want to enroll her in the study. However, your mother immigrated to the U.S. as an adult and speaks limited English. When you reach out to the research team, they tell you she is ineligible because they are recruiting only English speakers. </p>
<p>Unfortunately, this is an all too likely outcome of a scenario like this, because non-English speakers are frequently <a href="https://doi.org/10.5455/aim.2017.25.112-115">excluded from clinical trials</a> and research studies in the U.S.</p>
<p>Despite efforts to increase research participation, <a href="https://doi.org/10.1097/ACM.0b013e318208289a">racial and ethnic minorities remain underrepresented</a> in results. A review of 5,008 papers in three pediatric journals from 2012 to 2021 revealed that <a href="https://doi.org/10.1001/jamapediatrics.2022.3828">only 9% of these studies included non-English speaking</a> volunteers. </p>
<p>Language is a <a href="https://doi.org/10.2105/AJPH.2013.301706">key barrier to participation</a>, as even those with some English proficiency are less likely to participate in studies when recruitment materials <a href="https://doi.org/10.2105/AJPH.2013.301706">aren’t in their native language</a>. Language barriers also hinder a person’s ability to provide <a href="https://doi.org/10.1002/eahr.500028">informed consent</a> <a href="https://doi.org/10.4103/0253-7176.70517">to participate</a>.</p>
<p>This problem is not likely to fade away. The number of people with limited English proficiency in the U.S. grew by 80% between 1990 and 2013, going from nearly <a href="https://www.migrationpolicy.org/article/limited-english-proficient-population-united-states-2013">14 million to 25.1 million people</a>. As of 2022, this number rose to <a href="https://www.migrationpolicy.org/programs/data-hub/us-immigration-trends#lep">26.5 million people</a>. Excluding people with limited English proficiency is not only unethical, as these groups deserve the same access to experimental and evolving therapies as the English-speaking population, but also limits <a href="https://doi.org/10.2105/AJPH.2013.301706">how applicable research findings are</a> to the general population.</p>
<p>One way to eliminate language barriers is by translating research documents. <a href="https://scholar.google.com/citations?user=NG1Yem8AAAAJ&hl=en">As a translation scholar</a>, I strive to discover ways to improve translation quality to benefit the research community and broader society. Translation in research, however, is not straightforward. Not only must the translated materials be accurate, they also have to serve their intended purpose.</p>
<p>The most commonly used method to evaluate translation quality in health research <a href="https://doi.org/10.1177/0163278716648191">is backtranslation</a> – translating the translated text into the original language and assessing how well it matches the original text. And yet, this method <a href="https://doi.org/10.1177/135910457000100301">relies on outdated scholarship</a> from the 1970s, perpetuating serious misconceptions about how translation works.</p>
<h2>Understanding translation</h2>
<p>Translation involves much more than just transferring written words from one language to another. For many health researchers, the goal of translation is to <a href="https://doi.org/10.2307/411434">transfer meaning</a> so it remains intact in a new language. Along these lines, the translator is meant to be a conduit of perfect linguistic equivalence. Yet, current work in the field of translation studies indicates this perfect match or meaning transfer is <a href="https://www.routledge.com/Translation-Studies/Bassnett/p/book/9780415506731">only an illusion</a>.</p>
<p>A translator is not a conduit of meaning, but both a reader of the original text and a writer of the translation. As such, translators <a href="https://www.taylorfrancis.com/chapters/edit/10.4324/9781315678627-90/positioning-theo-hermans">have their own positioning</a> in the world that comes with a set of conscious or unconscious values and knowledge that bias how they read and write. Translation is a <a href="https://translation.utdallas.edu/what-is-translation-studies/translation-and-reading/">process of interpretation</a> regardless of how objective a translator aims to be.</p>
<p>Furthermore, languages do not match structurally or culturally. For instance, the English sentence “I arrived late” structurally corresponds to the Spanish “Yo llegué tarde” because the grammar lines up. But because Spanish expresses subject information through verb endings (“lleg-ué”), the “Yo” is normally interpreted as contrastive, meaning that “I” was the one who arrived late as opposed to someone else.</p>
<p>A perfect match in backtranslation often reflects a translation that is <a href="https://doi.org/10.1177/0163278716648191">too similar to the original</a>, such that it often contradicts the norms of the translated language. For instance, a <a href="https://doi.org/10.1177/0163278705275342">health status questionnaire</a> translated “My thinking is clear” into Portuguese as “O meu pensamento é claro.” Despite good backtranslation results, patients in Brazil stated it was unclear. Changing it to “Consigo pensar claramente” (“I am able to think clearly”) communicated more effectively and naturally with the target population.</p>
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<a href="https://images.theconversation.com/files/563462/original/file-20231204-17-l9egxc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Health care professional holding clipboard while talking to a patient" src="https://images.theconversation.com/files/563462/original/file-20231204-17-l9egxc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/563462/original/file-20231204-17-l9egxc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/563462/original/file-20231204-17-l9egxc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/563462/original/file-20231204-17-l9egxc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/563462/original/file-20231204-17-l9egxc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/563462/original/file-20231204-17-l9egxc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/563462/original/file-20231204-17-l9egxc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Patients with limited English proficiency are less likely to participate in research studies if the materials aren’t in their primary language.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/female-mental-health-professional-talks-with-royalty-free-image/917744736">SDI Productions/E+ via Getty Images</a></span>
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<p>Translation scholars suggest that a more realistic, descriptive and explanatory approach to translation is one governed by <a href="https://doi.org/10.4324/9781315760506">what the commissioner wants to achieve</a> with the translation. Under this view, the translator makes decisions according to the type of text being translated and to the purpose of the translation.</p>
<p>How translators approach texts and what strategies they use to translate them varies with each document. Some texts require closer adherence to the words of the original than others. For instance, legal or regulatory considerations require translating the chemical ingredients list of a medication more closely to the structure of the source than a recruitment flyer that aims to convince readers to participate in a study. <a href="https://doi.org/10.1177/0163278716648191">Translators of research documents</a> need to determine the needs of the specific text in collaboration with both the researchers and representatives of the population they’re studying.</p>
<h2>Translation affects research results</h2>
<p>Recent studies show that translation can affect data validity and reliability. An inadequate approach may result in translated materials that don’t work as intended. For instance, a survey may produce <a href="https://doi.org/10.1002/eahr.500115">incomplete or incorrect data</a> if participants misunderstand or are unclear about the questions.</p>
<p>My team and I investigated how different translation approaches affected how readers responded to translated materials. We had bilingual participants review two versions of a survey measuring perceptions of stress. Each version was translated into Spanish in a different way. </p>
<p>One of the two translations was produced with a literal approach that aimed to be as equivalent as possible to the original, while the other followed a <a href="https://doi.org/10.1177/0163278716648191">functionalist approach</a> that focused on achieving the purpose specified for the translation. In this case, the goal was to obtain data on how a Spanish-speaking population perceives daily stress.</p>
<p>We asked participants to review the two translated versions of the survey, then indicate any unclear sections and which version they preferred. We found that participants <a href="https://doi.org/10.1002/eahr.500115">preferred the functionalist translation</a> and identified a higher number of problems in the translation focused on equivalence. Participants commented that the “equivalent” translation was more difficult to understand, too direct and seemed obviously translated.</p>
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<a href="https://images.theconversation.com/files/563463/original/file-20231204-25-uls439.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Close-up of the first page of the 'A' section of an English-Spanish dictionary" src="https://images.theconversation.com/files/563463/original/file-20231204-25-uls439.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/563463/original/file-20231204-25-uls439.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/563463/original/file-20231204-25-uls439.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/563463/original/file-20231204-25-uls439.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/563463/original/file-20231204-25-uls439.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/563463/original/file-20231204-25-uls439.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/563463/original/file-20231204-25-uls439.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=502&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">A literal translation may not best serve the aims of its commissioner.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/english-spanish-dictionary-royalty-free-image/483136313">parema/E+ via Getty Images</a></span>
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<p>Other studies have shown that <a href="https://aclanthology.org/R15-1014">translated materials</a> <a href="https://doi.org/10.6035/MonTI.2018.10.2">are less accessible overall</a> compared with the original documents. Researchers have also found that some translation approaches increase reading complexity. One study found that a survey used to measure the health progress of patients translated with a functionalist approach <a href="https://doi.org/10.1044/2017_AJA-17-0018">had better readability</a> than published counterparts that used a more literal approach.</p>
<p>The translation process is complicated. Lack of awareness of its complexities can affect not only equitable participation in research but also the validity and reliability of its methodology and findings. But with the right approach, translation can increase a study’s reach, diversify its data and lead to new findings and ideas. Reaching out to a translation scholar before starting a project can help scholars prevent their data and research from getting lost in translation.</p><img src="https://counter.theconversation.com/content/215942/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Sonia Colina works for the National Center for Interpretation at the University of Arizona. She has received funding from the National Institutes of Health</span></em></p>
Translation involves more than just transferring words from one language to another. Better translations of study materials can improve both the diversity of study participants and research results.
Sonia Colina, Professor of Spanish and Portuguese, University of Arizona
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/212182
2023-08-30T20:35:41Z
2023-08-30T20:35:41Z
We won’t always have to use animals for medical research. Here’s what we can do instead
<figure><img src="https://images.theconversation.com/files/545212/original/file-20230829-23-6du48r.jpg?ixlib=rb-1.1.0&rect=29%2C266%2C3265%2C2089&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/funny-white-rat-looking-out-cage-592100393">Shutterstock</a></span></figcaption></figure><p>Animals have been used for medical research for thousands of years, dating back to ancient Greece where the <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4495509/">first dissections</a> were performed. </p>
<p>These days, one of the main uses of animals is to ensure the safety of medical products before they’re trialled in humans. </p>
<p>But in addition to the important ethical reasons for minimising animal use, the reality is sometimes animals just aren’t that good at predicting human responses. No animal model, for example, has captured all the human characteristics of complex illnesses like <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3543097/">Alzheimer’s disease</a> or <a href="https://ncats.nih.gov/news/releases/2022/researchers-create-3-D-model-for-rare-neuromuscular-disorders-setting-stage-for-clinical-trial">chronic inflammatory demyelinating polyneuropathy</a> (a neuromuscular disease). This makes is hard to develop effective treatments and cures.</p>
<p>Thankfully, researchers are making progress in developing a collection of alternative approaches, called “non-animal models”. A new <a href="https://www.csiro.au/nonanimalmodels">report</a> from our team at CSIRO Futures examines the potential of non-animal models and the actions Australia will need to take to pursue their use.</p>
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Read more:
<a href="https://theconversation.com/can-we-ethically-justify-harming-animals-for-research-196387">Can we ethically justify harming animals for research?</a>
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<h2>What are non-animal models?</h2>
<p>Non-animal models are an alternative set of models that use human cells, tissues and data. </p>
<p>These have the potential to better mimic human responses. In doing so, this can more accurately predict if a medical product is likely to fail, allowing reinvestment in products that are more likely to succeed. </p>
<p>Computer simulations or “in silico models” are one example. These can be used across the medical product development process to complement – and in time potentially replace – other model types. They can be used in drug studies to model a drug’s behaviour within the body, from cellular interactions to processes that involve multiple organs.</p>
<p>Complex three-dimensional biological models are also maturing quickly. Examples include:</p>
<ul>
<li><p><a href="https://hsci.harvard.edu/organoids">organoids</a> – organ “buds” that can be propagated from stem cells or taken from biopsies </p></li>
<li><p><a href="https://www.nature.com/articles/s43586-022-00118-6">organs-on-chips</a> – cells cultured in a miniature engineered chip. These attempt to replicate the physical environment of human organs.</p></li>
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<h2>What can we use non-animal models for?</h2>
<p>In theory, we can use non-animal models for everything we use animal models for – and more.</p>
<p>Simple non-animal models (human cells cultured over a flat surface) are <a href="https://www.novartis.com/stories/systematically-exposing-vulnerabilities-cancer-cells">already used to help identify drug targets</a> due to their ability to test a large number of compounds and experimental conditions. </p>
<p>In the future, non-animal models will reduce – and eventually replace – animal use across a range of applications:</p>
<ul>
<li>screening potential drugs to see how well they work</li>
<li>toxicology (safety) testing</li>
<li>helping to screen, select and stratify shortlisted participants for clinical trials. This might include an assessment of their unique response to a potential drug.</li>
<li>using patient cells to identify the treatment most likely to help that individual.</li>
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<p>Outside of medical products designed for humans, non-animal models can also support innovation in veterinary and agricultural medicines, cosmetic testing and eco-toxicology.</p>
<figure class="align-center ">
<img alt="Woman applies lipstick" src="https://images.theconversation.com/files/545213/original/file-20230829-15-sw8ysk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/545213/original/file-20230829-15-sw8ysk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=316&fit=crop&dpr=1 600w, https://images.theconversation.com/files/545213/original/file-20230829-15-sw8ysk.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=316&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/545213/original/file-20230829-15-sw8ysk.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=316&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/545213/original/file-20230829-15-sw8ysk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=398&fit=crop&dpr=1 754w, https://images.theconversation.com/files/545213/original/file-20230829-15-sw8ysk.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=398&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/545213/original/file-20230829-15-sw8ysk.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=398&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Non-animal models can be used to test cosmetics.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/hispanic-latina-putting-lipstick-front-bathroom-2028019892">Shutterstock</a></span>
</figcaption>
</figure>
<h2>An export opportunity for Australia</h2>
<p>Non-animal models present an economic opportunity for Australia, where the models, their components, and surrounding services could be exported to the world.</p>
<p>Our novel economic analysis sized the potential Australian market for two non-animal models: organoids and organs-on-chips. Other models were unable to be sized due to a lack of global market data. </p>
<p>We estimate the Australian organoid market could be worth A$1.3 billion annually by 2040 and create 4,200 new jobs. </p>
<p>The organs-on-chips market could be worth A$300 million annually by 2040 and create 1,000 new jobs. This estimate is lower as this technology is currently less advanced but holds the potential to grow significantly beyond 2040.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/mechanical-forces-in-a-beating-heart-affect-its-cells-dna-with-implications-for-development-and-disease-173484">Mechanical forces in a beating heart affect its cells' DNA, with implications for development and disease</a>
</strong>
</em>
</p>
<hr>
<p>Several Australian entities are already contributing to these opportunities. The Murdoch Children’s Research Institute, for example, provides stem cell and modelling expertise as part of <a href="https://novonordiskfonden.dk/en/projects/novo-nordisk-foundation-center-for-stem-cell-medicine-renew">reNEW</a>, a €300 million international collaboration. </p>
<p>Another example is from <a href="https://schott-minifab.com/">Schott Minifab</a>, an international biotech and medical device company with Australian roots, which has successfully established scaled production of non-animal model components in Australia for domestic and export markets.</p>
<h2>Making it a reality</h2>
<p>Non-animal models have already begun to complement and replace animal use in some areas, such as identifying drug targets. </p>
<p>However, accelerating their development and adoption across a wider range of applications will require further technical advances to lower cost and validate their performance as superior models. </p>
<p>Australia has several research strengths in this field but we need a concentrated effort to help our research make it through to real world impact. </p>
<p>Our report makes ten recommendations for supporting Australia’s pursuit of these opportunities. Critical activities over the next five years include:</p>
<ul>
<li>coordinating local capabilities </li>
<li>investing in upgraded infrastructure</li>
<li>creating and collating data that compares animal and non-animal model performance.</li>
</ul>
<p>Governments, industry and research must collaborate to deliver against these actions. Success will only come from collective efforts.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/is-it-time-for-australia-to-be-more-open-about-research-involving-animals-103439">Is it time for Australia to be more open about research involving animals?</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/212182/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>
As well as the important ethical reasons for minimising animal use in research, the reality is sometimes animals just aren’t that good at predicting human responses.
Greg Williams, Associate Director, CSIRO Futures, CSIRO
Laura Anne Thomas, Strategy Manager, CSIRO Futures, CSIRO
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/207551
2023-07-13T15:25:19Z
2023-07-13T15:25:19Z
San and Khoe skeletons: how a South African university sought to restore dignity and redress the past
<figure><img src="https://images.theconversation.com/files/536517/original/file-20230710-23-mw77lw.jpg?ixlib=rb-1.1.0&rect=21%2C144%2C2326%2C2008&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A facial reconstruction of one of the Sutherland Nine, a woman named Saartje.</span> <span class="attribution"><span class="source">Reconstruction by Dr Kathryn Smith/Professor Caroline Wilkinson</span></span></figcaption></figure><p>It has been nearly 100 years since the skeletonised remains of nine people were removed from their graves on a farm near the town of Sutherland in South Africa’s Northern Cape province. They were donated to the University of Cape Town’s (UCT) anatomy department by Carel Gert Coetzee, who had unearthed them and was a medical student at the university.</p>
<p>The remains belonged to <a href="https://www.sahistory.org.za/article/khoisan">San and Khoekhoe people</a>, two groups indigenous to South Africa. Their families were not consulted about the removal and donation. </p>
<p>This, sadly, was not unusual for the time. Anatomy departments and museums around the world <a href="http://www.northern-cape.gov.za/index.php/component/content/article?id=769:reburial-of-mr-and-mrs-klaas-and-trooi-pienaar">collected</a> human skeletal remains during the colonial era and into the first half of the 20th century. They were displayed in museums or studied for scientific purposes, often with <a href="https://theconversation.com/science-and-race-in-south-africa-lessons-from-old-bones-in-boxes-179774">a racial lens</a> depicting indigenous people as primitive and inferior. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/science-and-race-in-south-africa-lessons-from-old-bones-in-boxes-179774">Science and race in South Africa: lessons from 'old bones in boxes'</a>
</strong>
</em>
</p>
<hr>
<p>I am an associate professor in what is today the Division of Clinical Anatomy and Biological Anthropology. In 2017, after encouragement by other museums and universities in South Africa, I completed an archival record review with the aim to identify remains that had been unethically obtained. That was when I came across the Sutherland collection; and immediately realised that, as UCT, we had a moral and ethical duty to return them to their community. </p>
<p>A public participation advisor Doreen Februarie was appointed to approach the community. Myself and UCT’s senior leadership represented by DVC Professor Loretta Feris thought they would merely request the return of the remains for reburial. They did – but first, the descendent families asked the university to study the remains with a view to learning more about their ancestors’ lives. </p>
<p>We recently <a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0284785">presented</a> those research results in a single, large, multi-authored publication. </p>
<p>We traced historical records, conducted archaeological field work, analysed the physical remains and conducted biomolecular analyses. Facial reconstructions were completed for eight of the nine people – now known as the Sutherland Nine. </p>
<p>The Sutherland example may set a global precedent for a process of restitution and restorative justice in combination with community-driven science. <a href="https://doi.org/10.1093/oxfordhb/9780197607695.013.29?">My hope</a> is that more curators and custodians of human skeletal remains elsewhere in the world will attempt to redress some of the wrongs of the past.</p>
<h2>Beginning the process</h2>
<p>To ensure that we reached the right people in Sutherland, a public participation advisor was chosen to lead a process with the community. By then, I had studied the archival records related to the donation; these revealed names and two surnames. The community elected those carrying the same surnames as their representatives.</p>
<p>People were shocked and dismayed at the situation. But they also wanted to know who the nine had been and how their remains came to be at the university. </p>
<p>Our answers were limited. When I realised in 2017 that they had been unethically obtained, the department placed a moratorium on studying them. The community requested that this be lifted: they wanted the remains studied to understand the people and the situation. Once this was done they wanted the remains returned so the nine could be reburied properly. </p>
<p>As our research unfolded, we decided to present the results in a single publication. The more common approach would have been to publish several individual papers, focusing on the science. We decided instead to tell the story of the Nine with science as the background. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/why-scholars-have-created-global-guidelines-for-ancient-dna-research-169284">Why scholars have created global guidelines for ancient DNA research</a>
</strong>
</em>
</p>
<hr>
<p>We obtained informed consent from the community at every step of the process. The family members wrote in their own words what research they wanted and why, along with their restrictions on data use. For instance, they didn’t want any photos of the actual bones to be published – only digital renderings could be used. They also asked that the DNA sequences obtained from each of the Nine be kept private after scientific verification through peer review. And if anyone wants to conduct future research they must approach the families to begin a new process. </p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/536520/original/file-20230710-21-2lt3b7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/536520/original/file-20230710-21-2lt3b7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/536520/original/file-20230710-21-2lt3b7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/536520/original/file-20230710-21-2lt3b7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/536520/original/file-20230710-21-2lt3b7.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/536520/original/file-20230710-21-2lt3b7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/536520/original/file-20230710-21-2lt3b7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/536520/original/file-20230710-21-2lt3b7.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">Members of the descendent community viewing the facial reconstructions.</span>
<span class="attribution"><span class="source">Je’nine May</span></span>
</figcaption>
</figure>
<p>The families of the nine were also asked whether they wanted to be listed as authors in the eventual publications. Collectively, they chose formal acknowledgement in lieu of authorship. </p>
<h2>Hard lives</h2>
<p>It is impossible to summarise all our research findings here. Overall, though, we found that life was physically hard and violent for the Sutherland Nine. One died as recently as 1913; the remaining seven died in the 1870s or 1880s. </p>
<p>When the late professor of anatomy MR Drennan took delivery of the remains in the 1920s, he also noted what little the donor knew about the people’s lives. Most adults were identified by first names (Cornelius, Klaas, Saartje, Jannetje, Voetje, Totje). For two, surnames were also specified – Cornelius Abraham and Klaas Stuurman. </p>
<p>The descendent families have collaborated with the National San Council to rename the unnamed individuals.</p>
<p>The younger boy child (four to six years of age) has been named G!ae, from the N/uu language; it translates to “springbok” – an animal symbolising the San’s pride in their culture and future prosperity. The older girl child (six to eight years of age) has been named Saa, which translates to “eland”, a sacred and spiritual animal in San culture. </p>
<p>The ninth individual did not live at the same time as the others. He was an unnamed adult said by the donor to have been buried 40 years earlier near Sutherland, although the precise burial location was unrecorded. <a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0284785">We used</a> radiocarbon dating to show that he actually died about 700 years ago.</p>
<p>There is no evidence that this individual was directly related to the other eight, but his remains came to the institution from the same donor. He has been named Igue We, meaning “blessing”, to symbolise acceptance and blessing by San ancestors for his reburial. </p>
<h2>Painful legacy</h2>
<p>The principal message of this collaborative approach is how community-driven research can benefit processes of restitution when grappling with painful legacy collections. </p>
<p>The reburial of the remains in Sutherland is likely to take place later this year, though no date has yet been set.</p><img src="https://counter.theconversation.com/content/207551/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Victoria Gibbon receives funding from the National Research Foundation of South Africa and for this research also from National Geographic.</span></em></p>
Hopefully more curators and custodians of repositories of human skeletal remains will attempt to redress some of the wrongs of the past.
Victoria Gibbon, Associate Professor in Biological Anthropology, Division of Clinical Anatomy and Biological Anthropology, University of Cape Town
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/208276
2023-07-13T12:37:38Z
2023-07-13T12:37:38Z
Promising assisted reproductive technologies come with ethical, legal and social challenges – a developmental biologist and a bioethicist discuss IVF, abortion and the mice with two dads
<figure><img src="https://images.theconversation.com/files/534595/original/file-20230628-23-se3fkd.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C2000%2C1500&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A few days after successful fertilization, an embryo becomes a rapidly dividing ball of cells called a blastocyst.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/illustration/blastocyst-embryo-illustration-royalty-free-illustration/1498384521">Juan Gaertner/Science Photo Library via Getty Images</a></span></figcaption></figure><p><em>Assisted reproductive technologies are medical procedures that help people experiencing difficulty having or an inability to have biological children of their own. From in vitro fertilization to genetic screening to creation of viable eggs from the <a href="https://doi.org/10.1038/s41586-023-05834-x">skin cells of two male mice</a>, each new development speaks to the potential of reproductive technologies to expand access to the experience of pregnancy.</em> </p>
<p><em>Translating advances from the lab to the clinic, however, comes with challenges that go far beyond the purely technical.</em></p>
<p><em>Conversations around the ethics and implications of cutting-edge research often happen after the fact, when the science and technology have advanced beyond the point at which open dialogue could best protect affected groups. In the spirit of starting such cross-discipline conversations earlier, we invited developmental biologist <a href="https://scholar.google.com/citations?user=i6SghEMAAAAJ&hl=en">Keith Latham</a> of Michigan State University and bioethicist <a href="https://www.researchgate.net/profile/Mary-Faith-Marshall">Mary Faith Marshall</a> of the University of Virginia to discuss the ethical and technological potential of <a href="https://www.npr.org/sections/health-shots/2023/05/27/1177191913/sperm-or-egg-in-lab-breakthrough-in-reproduction-designer-babies-ivg">in vitro gametogenesis</a> and assisted reproductive technology post-Roe.</em></p>
<h2>How new are the ethical considerations raised by assisted reproductive technologies?</h2>
<p><strong>Keith</strong></p>
<p>Every new technology raises many of the same questions, and likely new ones. On the safety and risk-benefit side of the ethical conversation, there’s nothing here that we haven’t dealt with since the 1970s with other reproductive technologies. But it’s important to keep asking questions, because the benefits are hugely dependent on the success rate. There are potential biological costs, but also possible social costs, financial costs, societal costs and many others.</p>
<p><strong>Mary Faith</strong> </p>
<p>It’s probably been that way even longer. One of my mentors, Joseph Francis Fletcher, a pioneering bioethicist and Episcopal priest, wrote a book called “<a href="https://press.princeton.edu/books/hardcover/9780691635224/morals-and-medicine">Morals and Medicine</a>” in 1954. It was the first non-Roman Catholic treatment of bioethics. And he raised a lot of these issues there, including the <a href="https://theconversation.com/jurassic-world-scientists-still-havent-learned-that-just-because-you-can-doesnt-mean-you-should-real-world-genetic-engineers-can-learn-from-the-cautionary-tale-184369">technological imperative</a> – the idea that because we can develop the technology to do something, we therefore should develop it.</p>
<p>Fletcher also said that the use of artifice, or human-made creations, is supremely human. That’s what we do: We figure out how things work and we develop new technologies like vaccines and heart-lung machines based on evolving scientific knowledge.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/534596/original/file-20230628-30-nfjlun.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Microscopy image of mouse ovum being fertilized by mouse sperm" src="https://images.theconversation.com/files/534596/original/file-20230628-30-nfjlun.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/534596/original/file-20230628-30-nfjlun.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=388&fit=crop&dpr=1 600w, https://images.theconversation.com/files/534596/original/file-20230628-30-nfjlun.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=388&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/534596/original/file-20230628-30-nfjlun.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=388&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/534596/original/file-20230628-30-nfjlun.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=487&fit=crop&dpr=1 754w, https://images.theconversation.com/files/534596/original/file-20230628-30-nfjlun.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=487&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/534596/original/file-20230628-30-nfjlun.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=487&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Scientists were able to create a mouse egg from the skin cells of male mice.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/fertilization-of-mouse-ovum-royalty-free-image/523741410">Clouds Hill Imaging Ltd./Corbis Documentary via Getty Images</a></span>
</figcaption>
</figure>
<p>I think that in most cases, scientists should be involved in thinking about the implications of their work. But often, researchers focus more on the direct applications of their work than the potential indirect consequences. </p>
<p>Given the evolution of assisted reproductive technology, and the fact that its evolution is going to continue, I think one of the central questions to consider is, what are the goals of developing it? For assisted reproduction, it’s to help infertile people and people in nontraditional relationships have children.</p>
<h2>What are some recent developments in the field of assisted reproductive technology?</h2>
<p><strong>Keith</strong></p>
<p>One recent advance in assisted reproductive technology is the expansion of <a href="https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2020/03/preimplantation-genetic-testing">pre-implantation genetic testing</a> methods, particularly DNA sequencing. Many genes come in different variants, or alleles, that can be inherited from each parent. Providers can determine whether an embryo bears a “bad” allele that may increase the risk of certain diseases and select embryos with “healthy” alleles.</p>
<p>Genetic screening <a href="https://doi.org/10.1016/j.fertnstert.2022.03.017">raises several ethical concerns</a>. For example, the parents’ genetic profiles could be unwillingly inferred from that of the embryo. This possibility may deter prospective parents from having children, and such knowledge may also have potential effects on any future child. The cost of screening and potential need for additional cycles of IVF may also increase disparities.</p>
<p>There are also considerations about the <a href="https://doi.org/10.1016/j.fertnstert.2022.03.019">accuracy of screening predictions</a> without accounting for environmental effects, and what <a href="https://doi.org/10.1007/s12687-021-00573-w">level of genetic risk</a> is “serious” enough for an embryo to be excluded. More extensive screening also raises concerns about possible misuse for purposes other than disease prevention, such as production of “<a href="https://theconversation.com/an-american-company-will-test-your-embryos-for-genetic-defects-but-designer-babies-arent-here-just-yet-126833">designer babies</a>.”</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/uhb5gd5B-7g?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">In vitro gametogenesis involves making egg or sperm cells from other adult cells in the body.</span></figcaption>
</figure>
<p>At a <a href="https://www.nationalacademies.org/news/2023/02/agenda-for-third-international-summit-on-human-genome-editing-march-6-8">genome-editing conference</a> in March 2023, researchers announced that they were able to <a href="https://doi.org/10.1038/s41586-023-05834-x">delete and duplicate whole chromosomes</a> from the skin cells of male mice to make eggs. This method is one potential way to make eggs that do not carry genetic abnormalities. </p>
<p>They were very upfront that this was done at 1% efficiency in mice, which could be lower in humans. That means something bad happened to 99% of the embryos. The biological world is not typically binary, so a portion of that surviving 1% could still be abnormal. Just because the mice survived doesn’t mean they’re OK. I would say at this point, it would be unethical to try this on people.</p>
<p>As with some forms of genetic screening, using this technique to reduce the risk of one disease could inadvertently increase the risk of another. Determining that it is absolutely safe to duplicate a chromosome would require knowing every allele of every gene on that chromosome, and what each allele could do to the health of a person. That’s a pretty tall order, as that could involve identifying hundreds to thousands of genes, and the effects of all their variants may not be known. </p>
<p><strong>Mary Faith</strong></p>
<p>That raises the issue of efficacy and costs to yet another order of magnitude.</p>
<p><strong>Keith</strong> </p>
<p>Genome editing with <a href="https://theconversation.com/human-genome-editing-offers-tantalizing-possibilities-but-without-clear-guidelines-many-ethical-questions-still-remain-200983">CRISPR technology</a> in people carries similar concerns. Because of potential limitations in how precise the technology can be, it may be difficult for researchers to say they are absolutely 100% certain there won’t be off-target changes in the genome. Proceeding without that full knowledge could be risky. </p>
<p>But that’s where bioethicists need to come into play. Researchers don’t know what the full risk is, so how do you make that risk-benefit calculation?</p>
<p><strong>Mary Faith</strong></p>
<p>There’s the option of a voluntary global moratorium on using these technologies on human embryos. But somebody somewhere is <a href="https://theconversation.com/did-he-jiankui-make-people-better-documentary-spurs-a-new-look-at-the-case-of-the-first-gene-edited-babies-196714">still going to do it</a>, because the technology is just sitting there, waiting to be moved forward.</p>
<h2>How will the legal landscape affect the development and implementation of assisted reproductive technologies?</h2>
<p><strong>Mary Faith</strong></p>
<p>Any research that involves human embryos is in some ways politicized. Not only because the <a href="https://doi.org/10.1038/d41586-020-00127-z">government provides funding</a> to the basic science labs that conduct this research, but because of the wide array of beliefs that members of the public at large have about <a href="https://theconversation.com/defining-when-human-life-begins-is-not-a-question-science-can-answer-its-a-question-of-politics-and-ethical-values-165514">when life begins</a> or <a href="https://theconversation.com/what-is-personhood-the-ethics-question-that-needs-a-closer-look-in-abortion-debates-182745">what personhood means</a>.</p>
<p>The <a href="https://theconversation.com/roe-overturned-what-you-need-to-know-about-the-supreme-court-abortion-decision-184692">Dobbs decision</a>, which overturned the constitutional right to an abortion, has implications for assisted reproduction and beyond. Most people who are pregnant don’t even know they’re pregnant at the earliest stages, and somewhere around <a href="https://theconversation.com/most-human-embryos-naturally-die-after-conception-restrictive-abortion-laws-fail-to-take-this-embryo-loss-into-account-187904">60% of those pregnancies end naturally</a> because of genetic aberrations. Between 1973 and 2005, <a href="https://doi.org/10.1215/03616878-1966324">over 400 women were arrested for miscarriage in the U.S.</a>, and I think that number is going to grow. The implications for reproductive health care, and for assisted reproduction in the future, are challenging and frightening.</p>
<p>What will abortion restrictions mean for people who have <a href="https://www.cdc.gov/art/key-findings/multiple-births.html">multiple-gestation pregnancies</a>, in which they carry more than one embryo at the same time? In order to have one healthy child born from that process, the other embryos often need to be removed so they don’t all die. In the past 40 years, the number of twin births doubled and triplet and higher-order births quadrupled, primarily because of fertility treatments. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/534477/original/file-20230628-27-v0r0uc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Needle touching eggs in petri dish under microscope in IVF" src="https://images.theconversation.com/files/534477/original/file-20230628-27-v0r0uc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/534477/original/file-20230628-27-v0r0uc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/534477/original/file-20230628-27-v0r0uc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/534477/original/file-20230628-27-v0r0uc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/534477/original/file-20230628-27-v0r0uc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/534477/original/file-20230628-27-v0r0uc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/534477/original/file-20230628-27-v0r0uc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">IVF may involve transferring more than one embryo at a time.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/in-vitro-fertilization-royalty-free-image/1272954210">Antonio Marquez lanza/Moment via Getty Images</a></span>
</figcaption>
</figure>
<p><strong>Keith</strong> </p>
<p>IVF may transfer one, two, or sometimes three embryos at a time. The <a href="https://doi.org/10.1016/j.jpeds.2022.11.038">cost of care for preterm birth</a>, which is one possible outcome of multiple-gestation pregnancies, can be high. That’s in addition to the <a href="https://doi.org/10.1016/j.ajog.2013.10.005">cost of delivery</a>. IVF clinics are increasingly transferring just one embryo to mitigate such concerns.</p>
<p>The life-at-conception bills that have been put forth in some U.S. state legislatures and Congress may contain language claiming they are not meant to prevent IVF. But the language of the bills could be extended to affect procedures such as IVF with pre-implantation genetic testing to detect chromosomal abnormalities, particularly when single-embryo transfer is the goal. Pre-implantation genetic testing has been increasing, with one study estimating that <a href="https://doi.org/10.1001/jama.2022.1892">over 40% of all IVF cycles</a> in the U.S. in 2018 involved genetic screening. </p>
<p>Could life-at-conception bills criminalize clinics that don’t transfer embryos known to be genetically abnormal? Freezing genetically abnormal embryos could avoid destroying them, but that raises questions of, to what end? Who would pay for the storage, and who would be responsible for those embryos?</p>
<h2>How can we determine whether the risks outweigh the benefits when so much is unknown?</h2>
<p><strong>Keith</strong></p>
<p>Conducting studies in animal models is an important first step. In some cases, it either hasn’t been done or hasn’t been done extensively. Even with animal studies, you have to recognize that mice, rabbits and monkeys are not human. Animal models may reduce some risks before a technology is used in people, but they won’t eliminate all risks, because of biological differences between species.</p>
<p><strong>Mary Faith</strong> </p>
<p>We could look to the example of <a href="https://www.genome.gov/25520302/online-education-kit-1972-first-recombinant-dna">early recombinant DNA research in the U.S.</a> The federal government created the <a href="https://doi.org/10.1089%2Fhum.2013.2524">Recombinant DNA Advisory Committee at the National Institutes of Health</a> to oversee animal and early-phase human research involving synthetic or hybrid genetic material. </p>
<p>The <a href="https://doi.org/10.1126/science.307.5712.1028b">death of Jesse Gelsinger</a>, who was a participant in a gene therapy clinical trial in 1999, led to a halt in all gene therapy clinical trials in the U.S. for a time. When the Food and Drug Administration investigated what went wrong, they found huge numbers of adverse events in both humans and animals that should have been reported to the advisory committee but weren’t. Notably, the principal investigator of the trial was also the <a href="https://sciencehistory.org/stories/magazine/the-death-of-jesse-gelsinger-20-years-later/">primary shareholder</a> of the biotech company that made the drug being tested. That raises questions about the reality of oversight.</p>
<p>I think something like that earlier NIH advisory committee but for reproductive technologies would still be advisable. But researchers, policymakers and regulators need to learn from the lessons of the past to try to ensure that – especially in early-phase research – we’re very thoughtful about the potential risks and that research participants really understand what the implications are for participation in research. That would be one model for translating research from the animal into the human.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/534481/original/file-20230628-30590-2nwhy8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Child looking into a slip lamp microscope for an eye exam with a doctor" src="https://images.theconversation.com/files/534481/original/file-20230628-30590-2nwhy8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/534481/original/file-20230628-30590-2nwhy8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/534481/original/file-20230628-30590-2nwhy8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/534481/original/file-20230628-30590-2nwhy8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/534481/original/file-20230628-30590-2nwhy8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/534481/original/file-20230628-30590-2nwhy8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/534481/original/file-20230628-30590-2nwhy8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">The FDA approved a gene therapy for a form of congenital vision loss in 2017. The child in this photo, then 8, first received gene therapy at age 4.</span>
<span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/BlindnessTreatmentPrice/c567cc3a2b244cac8afc2b5ae2c62ca3">Bill West/AP Photo</a></span>
</figcaption>
</figure>
<p><strong>Keith</strong></p>
<p>A process to make sure that the people conducting studies don’t have a conflict of interest, like having the potential to commercially profit from the technology, would be useful. </p>
<p>Caution, consensus and cooperation should not take second place to profit motives. Altering the human genome in a way that allows human-made genetic changes to be <a href="https://doi.org/10.1089/crispr.2020.0096">propagated throughout the population</a> has a potential to alter the genetics of the human species as a whole. </p>
<p><strong>Mary Faith</strong></p>
<p>That raises the question of how long it will take for long-term effects to show. It’s one thing for an implanted egg not to survive. But how long will it take to know whether there are effects that aren’t obvious at birth?</p>
<p><strong>Keith</strong> </p>
<p>We’re still collecting long-term outcome data for people born using different reproductive technologies. So far there have been no obviously horrible consequences. But some abnormalities could take decades to manifest, and there are many variables to contend with. </p>
<p>One can arguably say that there’s substantial good in helping couples have babies. There can be a benefit to their emotional well-being, and reproduction is a natural part of human health and biology. And a lot of really smart, dedicated people are putting a lot of energy into making sure that the risks are minimized. We can also look to some of the practices and approaches to oversight that have been used over the past several decades.</p>
<p><strong>Mary Faith</strong></p>
<p>And thinking about international guidelines, such as from the <a href="https://cioms.ch">Council for International Medical Science</a> and other groups, could provide guidance on protecting human research subjects.</p>
<p><strong>Keith</strong></p>
<p>You hate to advocate for a world where the automatic response to anything new is “no, don’t do that.” My response is, “Show me it’s safe before you do it.” I don’t think that’s unreasonable.</p>
<p>Some people have a view that scientists don’t think about the ethics of research and what’s right and wrong, advisable or inadvisable. But we do think about it. I co-direct a research training program that includes teaching scientists how to responsibly and ethically conduct research, including speakers who specifically address the ethics of reproductive technologies. It is valuable to have a dialogue between scientists and ethicists, because ethicists will often think about things from a different perspective. </p>
<p>As people go through their scientific careers and see new technologies unfold over time, these discussions can help them develop a deeper appreciation and understanding of the broader impact of their research. It becomes our job to make sure that each generation of scientists is motivated to think about these things. </p>
<p><strong>Mary Faith</strong></p>
<p>It’s also really important to include stakeholders – people who are nonscientists, people who experience barriers to reproduction and people who are opposed to the idea – so they have a voice at the table as well. That’s how you get good policies, right? You have everyone who should be at the table, at the table.</p><img src="https://counter.theconversation.com/content/208276/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>
Scientists can create viable eggs from two male mice. In the wake of CRISPR controversies and restrictive abortion laws, two experts start a dialogue on ethical research in reproductive biology.
Keith Latham, Professor of Animal Science, Adjunct Professor of Obstetrics, Gynecology and Reproductive Biology, Michigan State University
Mary Faith Marshall, Professor of Biomedical Ethics, University of Virginia
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/208416
2023-06-29T15:01:08Z
2023-06-29T15:01:08Z
Researchers can learn a lot with your genetic information, even when you skip survey questions – yesterday’s mode of informed consent doesn’t quite fit today’s biobank studies
<figure><img src="https://images.theconversation.com/files/534693/original/file-20230628-29-j4a0gl.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C1999%2C1499&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Participants in biobank studies are often asked for broad consent to use their data.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/genetic-research-royalty-free-image/136810911">Science Photo Library - TEK IMAGE/Brand X Pictures via Getty Images</a></span></figcaption></figure><p>Imagine you agreed to be part of a new and exciting long-term research study to better understand human health and behavior. For the past few years, you’ve been visiting a collection site where you fill out some questionnaires about your health and daily activities. Research assistants take your height, weight and some other physical characteristics about you. Because you agreed to contribute your genetic data to the study, you also provided a saliva sample during your first visit.</p>
<p>Later, you see a news article reporting that researchers analyzing data from the study you’re participating in have <a href="https://www.vox.com/science-and-health/2018/8/23/17527708/genetics-genome-sequencing-gwas-polygenic-risk-score">found genetic variants</a> that predict the likelihood of someone completing college. You remember reading a long form when you consented to giving your data, but you can’t quite remember all the details. You know the study was about health, but how do these findings about genes and education have anything to do with health? Did they analyze your data specifically? What did they find? </p>
<h2>What are biobanks?</h2>
<p>Many scientific research studies collect data meant to answer a specific research question. For example, to study the genetics of diabetes, researchers might collect data on your blood pressure and lipid levels in addition to genetic data. But increasingly, scientists are collecting large amounts of data to be <a href="https://doi.org/10.1186/s12967-019-1922-3">kept in biobanks</a> – repositories that store genetic data and other biospecimens like blood, urine or tumor tissue to be used in a wide number of future studies.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/sOP8WacfBM8?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Biobank data is often used to conduct genome-wide association studies, or GWAS.</span></figcaption>
</figure>
<p>Some biobanks, like the <a href="https://www.ukbiobank.ac.uk">UK Biobank</a>, link biospecimen data to other collected data, such as sexual behavior, medical history, weight, diet and lifestyle. Private companies <a href="https://theconversation.com/how-a-south-african-communitys-request-for-its-genetic-data-raises-questions-about-ethical-and-equitable-research-166940">like 23andMe</a> also obtain consent from their customers to have their data used in research efforts.</p>
<p><a href="https://scholar.google.com/citations?user=zCedU50AAAAJ&hl=en&oi=ao">As a researcher</a> interested in the intersection between <a href="https://www.robbeewedow.com">social behaviors and genetics</a>, I frequently have conversations with people who weren’t aware of how their genetic data is being used. They’re often surprised that the genetic data they consented to be used for research at a private company by using a DNA testing kit or at a biobank while visiting their local clinic might be used to study the genetics of <a href="https://doi.org/10.1126/science.aat7693">same-sex sexual behavior</a> or <a href="https://doi.org/10.1038/s41588-018-0309-3">risk-taking</a>. </p>
<p>In our newly published research, my colleagues and I found that even <a href="https://www.nature.com/articles/s41562-023-01632-7">choosing not to respond to survey questions</a> can reveal information about the population (we found that not responding to survey questions is correlated with a person’s education, health and income levels) if genetic data is available.</p>
<h2>Genetic data and informed consent</h2>
<p>The research that can be done with biobank data might sound scary, but it shouldn’t be. Genetic data, like the data used in our study, is de-identified. This means that it cannot be linked back to individual research participants, who remain anonymous. Further, genetic data for these sorts of genetic studies is used <a href="https://doi.org/10.1038/s43586-021-00056-9">at the aggregate level</a>, meaning it isn’t used to predict or evaluate any one particular individual’s responses or behaviors.</p>
<p>Researchers aren’t using genetic data to target individuals with certain genetic profiles. Almost all genetic research is used to better understand how health behaviors and other factors affect health and to figure out ways to improve outcomes. This goal is why most research participants agree to contribute their data to research in the first place: to help the world through science.</p>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/CzNANZnoiRs?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Many developments in human subject protections arose in response to unethical research.</span></figcaption>
</figure>
<p>The problem is whether research participants really understand how their data can be used. Many of the original ideas around the development of the <a href="https://doi.org/10.1186/s12910-019-0414-6">informed consent process and Institutional Review Boards</a>, or IRBs, intended to protect research participants from direct harm or privacy violations were based on the expectation that research studies would be addressing particular questions about a single subject, like cardiovascular disease or lung cancer. This focus was so as not to repeat unethical research atrocities like the infamous <a href="https://www.cdc.gov/tuskegee/timeline.htm">Tuskegee Syphilis Study</a>, where researchers did not tell participants, who were all Black men, that they had syphilis and withheld treatment that was already widely available and known to be highly effective.</p>
<p>But since genetic data is de-identified, it is <a href="https://www.hhs.gov/ohrp/node/4350/index.html">often considered exempt from full IRB review</a>, which is a protocol to ensure studies meet ethical standards and institutional policies. And the broad number of research questions that can be explored with biobanks, along with the amount and types of data collected, has made these original protections to ensure truly informed consent insufficient.</p>
<h2>Improving informed consent</h2>
<p>To be clear, biobanks are enormously important for public health research. They allow researchers to <a href="https://theconversation.com/people-dont-mate-randomly-but-the-flawed-assumption-that-they-do-is-an-essential-part-of-many-studies-linking-genes-to-diseases-and-traits-194793">link many different outcomes and variables</a> together to paint a critical overall picture of human health and behavior. And in contrast with the <a href="https://theconversation.com/most-americans-dont-realize-what-companies-can-predict-from-their-data-110760">personally identifiable online or phone data</a> that companies collect to show you targeted ads, biobanks collect de-identified data that is evaluated in aggregate.</p>
<p>In the age of vast data collection, ensuring that participants are aware of how their data can and cannot be used is necessary to ensure that biobanks are a transparent tool for global good. Biobanks can’t predict how a participant’s data will be used in the future, so it can be difficult for researchers and ethicists to bring back the “informed” part of “informed consent.” Even so, more needs to be done to earn the trust of the valuable research participants who contribute the data to improve science and the world.</p><img src="https://counter.theconversation.com/content/208416/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Robbee Wedow is a research fellow at AnalytiXIN, which is a consortium of health-data organizations, industry partners and university partners in Indiana primarily funded through the Lilly Endowment, IU Health and Eli Lilly and Company.</span></em></p>
Biobanks collect and store large amounts of data that researchers use to conduct a wide range of studies. Making sure participants understand what they’re getting into can help build trust in science.
Robbee Wedow, Assistant Professor of Sociology and Data Science, Purdue University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/205557
2023-05-15T15:01:09Z
2023-05-15T15:01:09Z
You shed DNA everywhere you go – trace samples in the water, sand and air are enough to identify who you are, raising ethical questions about privacy
<figure><img src="https://images.theconversation.com/files/525993/original/file-20230512-24221-4caajm.png?ixlib=rb-1.1.0&rect=0%2C0%2C2121%2C1412&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A casual stroll on the beach can leave enough intact DNA behind to extract identifiable information.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/human-footprint-on-the-sand-royalty-free-image/1030780262">Comezora/Moment via Getty Images</a></span></figcaption></figure><p>Human DNA can be sequenced from small amounts of water, sand and air in the environment to <a href="https://www.nature.com/articles/s41559-023-02056-2">potentially extract identifiable information</a> like genetic lineage, gender, and health risks, according to our new research.</p>
<p>Every cell of the body <a href="https://calteches.library.caltech.edu/2687/1/bonner.pdf">contains DNA</a>. Because each person has a unique genetic code, DNA can be <a href="https://theconversation.com/genetic-paparazzi-are-right-around-the-corner-and-courts-arent-ready-to-confront-the-legal-quagmire-of-dna-theft-178866">used to identify individual people</a>. Typically, medical practitioners and researchers obtain human DNA through direct sampling, such as blood tests, swabs or biopsies. However, all living things, including animals, plants and microbes, <a href="https://doi.org/10.1016/j.biocon.2014.11.019">constantly shed DNA</a>. The water, soil and even the air contain microscopic particles of biological material from living organisms.</p>
<p>DNA that an organism has shed into the environment is known as <a href="https://doi.org/10.1093/biosci/biab027">environmental DNA, or eDNA</a>. For the last couple of decades, scientists have been able to collect and sequence eDNA from soil or water samples to <a href="https://theconversation.com/fishing-for-dna-free-floating-edna-identifies-presence-and-abundance-of-ocean-life-75957">monitor biodiversity, wildlife populations</a> and <a href="https://theconversation.com/environmental-dna-how-a-tool-used-to-detect-endangered-wildlife-ended-up-helping-fight-the-covid-19-pandemic-158286">disease-causing pathogens</a>. Tracking rare or elusive endangered species <a href="https://doi.org/10.1007/s00114-019-1605-1">through their eDNA</a> has been a boon to researchers, since traditional monitoring methods such as observation or trapping can be difficult, often unsuccessful and intrusive to the species of interest.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/q7mp1wxLoyA?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">The authors and their colleagues use environmental DNA to study sea turtles.</span></figcaption>
</figure>
<p>Researchers using eDNA tools usually focus only on the species they’re studying and disregard DNA from other species. However, humans <a href="https://theconversation.com/genetic-paparazzi-are-right-around-the-corner-and-courts-arent-ready-to-confront-the-legal-quagmire-of-dna-theft-178866">also shed</a>, cough and <a href="https://theconversation.com/who-sees-what-you-flush-wastewater-surveillance-for-public-health-is-on-the-rise-but-a-new-survey-reveals-many-us-adults-are-still-unaware-193007">flush DNA</a> into their surrounding environment. And as our team of geneticists, <a href="https://scholar.google.com/citations?user=czRqHV4AAAAJ&hl=en&oi=ao">ecologists</a> and <a href="https://scholar.google.com/citations?user=3cQ6umoAAAAJ&hl=en">marine biologists</a> in the <a href="https://scholar.google.com/citations?hl=en&user=LtNEh9gAAAAJ">Duffy Lab</a> at the University of Florida found, <a href="https://www.nature.com/articles/s41559-023-02056-2">signs of human life can be found everywhere</a> but in the most isolated locations. </p>
<h2>Animals, humans and viruses in eDNA</h2>
<p>Our team uses environmental DNA to study <a href="https://doi.org/10.1111/1755-0998.13617">endangered sea turtles and the viral tumors</a> to which they are susceptible. Tiny hatchling sea turtles shed DNA as they crawl along the beach on their way to the ocean shortly after they are born. <a href="https://doi.org/10.1111/1755-0998.13617">Sand scooped from their tracks</a> contains enough DNA to provide valuable insights into the turtles and the chelonid herpesviruses and <a href="https://theconversation.com/could-human-cancer-treatments-be-the-key-to-saving-sea-turtles-from-a-disfiguring-tumor-disease-98140">fibropapillomatosis tumors that afflict them</a>. Scooping a liter of <a href="https://doi.org/10.1038/s42003-021-02085-2">water from the tank</a> of a recovering sea turtle under veterinary care equally provides a wealth of genetic information for research. Unlike blood or skin sampling, collecting eDNA causes no stress to the animal.</p>
<p><a href="https://theconversation.com/genomic-sequencing-heres-how-researchers-identify-omicron-and-other-covid-19-variants-172935">Genetic sequencing technology</a> used to decode DNA has improved rapidly in recent years, and it is now possible to easily sequence the DNA of every organism in a sample from the environment. Our team suspected that the sand and water samples we were using to study sea turtles would also contain DNA from a number of other species – including, of course, humans. What we didn’t know was <a href="https://www.nature.com/articles/s41559-023-02056-2">just how informative</a> the human DNA we could extract would be. </p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/525991/original/file-20230512-33762-xb83ft.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Two people on a boat collecting water samples from a river" src="https://images.theconversation.com/files/525991/original/file-20230512-33762-xb83ft.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/525991/original/file-20230512-33762-xb83ft.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=800&fit=crop&dpr=1 600w, https://images.theconversation.com/files/525991/original/file-20230512-33762-xb83ft.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=800&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/525991/original/file-20230512-33762-xb83ft.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=800&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/525991/original/file-20230512-33762-xb83ft.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1005&fit=crop&dpr=1 754w, https://images.theconversation.com/files/525991/original/file-20230512-33762-xb83ft.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1005&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/525991/original/file-20230512-33762-xb83ft.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1005&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 researchers were able to collect intact human DNA in water samples from a river in Florida.</span>
<span class="attribution"><span class="source">Todd Osborne</span>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span>
</figcaption>
</figure>
<p>To figure this out, we took samples from a variety of locations in Florida, including the ocean and rivers in urban and rural areas, sand from isolated beaches and a remote island never usually visited by people. We found human DNA in all of those locations except the remote island, and these samples were high quality enough for analysis and sequencing. </p>
<p>We also tested the technique in Ireland, tracing along a river that winds from a remote mountaintop, through small rural villages and into the sea at a larger town of 13,000 inhabitants. We found human DNA everywhere but in the remote mountain tributary where the river starts, far from human habitation.</p>
<p>We also collected air samples from a room in our wildlife veterinary hospital in Florida. People who were present in the room gave us permission to take samples from the air. We recovered DNA matching the people, the animal patient and common animal viruses present at the time of collection.</p>
<p>Surprisingly, the human eDNA found in the local environment was intact enough for us to identify mutations associated with disease and to determine the genetic ancestry of people who live in the area. Sequencing DNA that volunteers left in their footprints in the sand even yielded part of their sex chromosomes.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/526004/original/file-20230513-16755-kheuum.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Diagram depicting eDNA collection sources and analysis workflow" src="https://images.theconversation.com/files/526004/original/file-20230513-16755-kheuum.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/526004/original/file-20230513-16755-kheuum.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=420&fit=crop&dpr=1 600w, https://images.theconversation.com/files/526004/original/file-20230513-16755-kheuum.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=420&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/526004/original/file-20230513-16755-kheuum.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=420&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/526004/original/file-20230513-16755-kheuum.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=528&fit=crop&dpr=1 754w, https://images.theconversation.com/files/526004/original/file-20230513-16755-kheuum.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=528&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/526004/original/file-20230513-16755-kheuum.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=528&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 eDNA can be collected and analyzed from a variety of sources.</span>
<span class="attribution"><span class="source">Liam Whitmore/Created with BioRender.com</span>, <a class="license" href="http://creativecommons.org/licenses/by-nc-nd/4.0/">CC BY-NC-ND</a></span>
</figcaption>
</figure>
<h2>Ethical implications of collecting human eDNA</h2>
<p>Our team dubs inadvertent retrieval of human DNA from environmental samples <a href="https://www.nature.com/articles/s41559-023-02056-2">“human genetic bycatch.”</a> We’re calling for deeper discussion about how to ethically handle human environmental DNA. </p>
<p>Human eDNA could present significant advances to research in fields as diverse as conservation, epidemiology, forensics and farming. If handled correctly, human eDNA could help archaeologists <a href="https://theconversation.com/who-owned-this-stone-age-jewellery-new-forensic-tools-offer-an-unprecedented-answer-204797">track down undiscovered ancient human settlements</a>, allow biologists to <a href="https://doi.org/10.1038/s42003-021-01656-7">monitor cancer mutations in a given population</a> or provide law enforcement agencies <a href="https://doi.org/10.1016/j.forsciint.2023.111599">useful forensic information</a>.</p>
<figure class="align-left zoomable">
<a href="https://images.theconversation.com/files/525989/original/file-20230512-7632-rct90g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Footprints in the sand at a beach" src="https://images.theconversation.com/files/525989/original/file-20230512-7632-rct90g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/525989/original/file-20230512-7632-rct90g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=899&fit=crop&dpr=1 600w, https://images.theconversation.com/files/525989/original/file-20230512-7632-rct90g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=899&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/525989/original/file-20230512-7632-rct90g.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=899&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/525989/original/file-20230512-7632-rct90g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1130&fit=crop&dpr=1 754w, https://images.theconversation.com/files/525989/original/file-20230512-7632-rct90g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1130&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/525989/original/file-20230512-7632-rct90g.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1130&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 researchers extracted identifiable genetic information from footprints in the sand.</span>
<span class="attribution"><span class="source">David Duffy</span>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span>
</figcaption>
</figure>
<p>However, there are also myriad ethical implications relating to the inadvertent or deliberate collection and analysis of human genetic bycatch. Identifiable information can be extracted from eDNA, and accessing this level of detail about individuals or populations comes with <a href="https://theconversation.com/how-a-south-african-communitys-request-for-its-genetic-data-raises-questions-about-ethical-and-equitable-research-166940">responsibilities relating to consent and confidentiality</a>.</p>
<p>While we conducted our study with the approval of our <a href="https://doi.org/10.2146/ajhp070066">institutional review board</a>, which ensures that studies on people adhere to ethical research guidelines, there is no guarantee that everyone will treat this type of information ethically. </p>
<p>Many questions arise regarding human environmental DNA. For instance, who should have access to human eDNA sequences? Should this information be made publicly available? Should consent be required before taking human eDNA samples, and from whom? Should researchers remove human genetic information from samples originally collected to identify other species?</p>
<p>We believe it is vital to implement regulations that ensure collection, analysis and data storage are carried out ethically and appropriately. Policymakers, scientific communities and other stakeholders need to take human eDNA collection seriously and balance consent and privacy against the possible benefits of studying eDNA. Raising these questions now can help ensure everyone is aware of the capabilities of eDNA and provide more time to develop protocols and regulations to ensure appropriate use of eDNA techniques and the ethical handling of human genetic bycatch.</p><img src="https://counter.theconversation.com/content/205557/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jessica Alice Farrell received funding from the Gumbo Limbo Nature Center d/b/a Friends of Gumbo Limbo (a 501c3 non-profit organization) through a generous donation through their Graduate Research Grant programme</span></em></p><p class="fine-print"><em><span>Jenny Whilde 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>
Environmental DNA provides a wealth of information for conservationists, archaeologists and forensic scientists. But the unintentional pickup of human genetic information raises ethical questions.
Jenny Whilde, Adjunct Research Scientist in Marine Bioscience, University of Florida
Jessica Alice Farrell, Postdoctoral associate, University of Florida
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/202944
2023-04-04T03:38:26Z
2023-04-04T03:38:26Z
I used to work at Google and now I’m an AI researcher. Here’s why slowing down AI development is wise
<figure><img src="https://images.theconversation.com/files/519175/original/file-20230404-26-k992e9.jpeg?ixlib=rb-1.1.0&rect=0%2C0%2C6016%2C4016&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Chuttersnap / Unsplash</span></span></figcaption></figure><p>Is it time to put the brakes on the development of artificial intelligence (AI)? If you’ve quietly asked yourself that question, you’re not alone.</p>
<p>In the past week, a host of AI luminaries signed an <a href="https://futureoflife.org/open-letter/pause-giant-ai-experiments/">open letter</a> calling for a six-month pause on the development of more powerful models than <a href="https://openai.com/product/gpt-4">GPT-4</a>; European researchers <a href="https://www.law.kuleuven.be/ai-summer-school/open-brief/open-letter-manipulative-ai">called</a> for tighter AI regulations; and long-time AI researcher and critic Eliezer Yudkowsky demanded <a href="https://time.com/6266923/ai-eliezer-yudkowsky-open-letter-not-enough/">a complete shutdown of AI development</a> in the pages of TIME magazine.</p>
<p>Meanwhile, the industry shows no sign of slowing down. In March, a senior AI executive at Microsoft <a href="https://www.platformer.news/p/microsoft-just-laid-off-one-of-its">reportedly</a> spoke of “very, very high” pressure from chief executive Satya Nadella to get GPT-4 and other new models to the public “at a very high speed”.</p>
<p>I worked at Google until 2020, when I left to study responsible AI development, and now I research human-AI creative collaboration. I am excited about the potential of artificial intelligence, and I believe it is already ushering in a new era of creativity. However, I believe a temporary pause in the development of more powerful AI systems is a good idea. Let me explain why.</p>
<h2>What is GPT-4 and what is the letter asking for?</h2>
<p>The open letter published by the US non-profit <a href="https://futureoflife.org">Future of Life Institute</a> makes a straightforward request of AI developers: </p>
<blockquote>
<p>We call on all AI labs to immediately pause for at least 6 months the training of AI systems more powerful than GPT-4.</p>
</blockquote>
<p>So what is GPT-4? Like its predecessor GPT-3.5 (which powers the popular ChatGPT chatbot), GPT-4 is a kind of generative AI software called a “large language model”, developed by OpenAI.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/evolution-not-revolution-why-gpt-4-is-notable-but-not-groundbreaking-201858">Evolution not revolution: why GPT-4 is notable, but not groundbreaking</a>
</strong>
</em>
</p>
<hr>
<p>GPT-4 is much larger and has been trained on significantly more data. Like other large language models, GPT-4 works by guessing the next word in response to prompts – but it is nonetheless incredibly capable. </p>
<p>In tests, it passed legal and medical exams, and can write software better than professionals in many cases. And its full range of abilities is <a href="https://openai.com/research/gpt-4">yet to be discovered</a>.</p>
<h2>Good, bad, and plain disruptive</h2>
<p>GPT-4 and models like it are likely to have huge effects across many layers of society.</p>
<p>On the upside, they could enhance human creativity and scientific discovery, lower barriers to learning, and be used in <a href="https://www.youtube.com/watch?v=CL923loG1G4">personalised educational tools</a>. On the downside, they could facilitate personalised phishing attacks, produce disinformation at scale, and be used to hack through the network security around computer systems that control <a href="https://www.youtube.com/watch?v=gA1sNLL6yg4">vital infrastructure</a>.</p>
<p>OpenAI’s <a href="https://arxiv.org/abs/2303.10130">own research</a> suggests models like GPT-4 are “general-purpose technologies” which will impact some 80% of the US workforce.</p>
<h2>Layers of civilisation and the pace of change</h2>
<p>The US writer Stewart Brand has <a href="https://jods.mitpress.mit.edu/pub/issue3-brand/release/2">argued</a> that a “healthy civilisation” requires different systems or layers to move at different speeds: </p>
<blockquote>
<p>The fast layers innovate; the slow layers stabilise. The whole combines learning with continuity.</p>
</blockquote>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/518955/original/file-20230403-24-i9tehp.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/518955/original/file-20230403-24-i9tehp.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/518955/original/file-20230403-24-i9tehp.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=328&fit=crop&dpr=1 600w, https://images.theconversation.com/files/518955/original/file-20230403-24-i9tehp.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=328&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/518955/original/file-20230403-24-i9tehp.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=328&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/518955/original/file-20230403-24-i9tehp.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=412&fit=crop&dpr=1 754w, https://images.theconversation.com/files/518955/original/file-20230403-24-i9tehp.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=412&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/518955/original/file-20230403-24-i9tehp.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=412&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">According to the ‘pace layers’ model, different layers of a healthy civilisation move at different speeds, from the slow movement of nature to the rapid shifts of fashion.</span>
<span class="attribution"><a class="source" href="https://jods.mitpress.mit.edu/pub/issue3-brand/release/2">Stewart Brand / Journal of Design and Science</a></span>
</figcaption>
</figure>
<p>In Brand’s “pace layers” model, the bottom layers change more slowly than the top layers. </p>
<p>Technology is usually placed near the top, somewhere between fashion and commerce. Things like regulation, economic systems, security guardrails, ethical frameworks, and other aspects exist in the slower governance, infrastructure and culture layers. </p>
<p>Right now, technology is accelerating much faster than our capacity to understand and regulate it – and if we’re not careful it will also drive changes in those lower layers that are too fast for safety.</p>
<p>The US sociobiologist E.O. Wilson <a href="https://www.oxfordreference.com/display/10.1093/acref/9780191826719.001.0001/q-oro-ed4-00016553;jsessionid=B16472C263BC86A58761AD3414367819">described</a> the dangers of a mismatch in the different paces of change like so:</p>
<blockquote>
<p>The real problem of humanity is the following: we have Paleolithic emotions, medieval institutions, and god-like technology.</p>
</blockquote>
<h2>Are there good reasons to maintain the current rapid pace?</h2>
<p>Some argue that if top AI labs slow down, other unaligned players or countries like China will outpace them. </p>
<p>However, training complex AI systems is not easy. OpenAI is ahead of its US competitors (including Google and Meta), and developers in China and other countries also lag behind. </p>
<p>It’s unlikely that “rogue groups” or governments will surpass GPT-4’s capabilities in the foreseeable future. Most AI talent, knowledge, and computing infrastructure is <a href="https://www.washingtonpost.com/business/2023/03/27/amazon-google-scramble-to-keep-pace-with-openai-despite-huge-ai-teams/10593f66-cc5d-11ed-8907-156f0390d081_story.html">concentrated</a> in a handful of top labs.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/ai-chatbots-with-chinese-characteristics-why-baidus-chatgpt-rival-may-never-measure-up-202109">AI chatbots with Chinese characteristics: why Baidu's ChatGPT rival may never measure up</a>
</strong>
</em>
</p>
<hr>
<p><a href="https://www.dair-institute.org/blog/letter-statement-March2023">Other critics</a> of the Future of Life Institute letter say it relies on an overblown perception of current and future AI capabilities. </p>
<p>However, whether or not you believe AI will reach a state of general superintelligence, it is undeniable that this technology will impact many facets of human society. Taking the time to let our systems adjust to the pace of change seems wise. </p>
<h2>Slowing down is wise</h2>
<p>While there is plenty of room for disagreement over specific details, I believe the Future of Life Institute letter points in a wise direction: to take ownership of the pace of technological change. </p>
<p>Despite what we have seen of the disruption caused by social media, Silicon Valley still tends to follow Facebook’s infamous motto of “<a href="https://www.businessinsider.com/mark-zuckerberg-innovation-2009-10?r=US&IR=T">move fast and break things</a>”.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/has-gpt-4-really-passed-the-startling-threshold-of-human-level-artificial-intelligence-well-it-depends-202856">Has GPT-4 really passed the startling threshold of human-level artificial intelligence? Well, it depends</a>
</strong>
</em>
</p>
<hr>
<p>I believe a wise course of action is to slow down and think about where we want to take these technologies, allowing our systems and ourselves to adjust and engage in diverse, thoughtful conversations. It is not about stopping, but rather moving at a sustainable pace of progress. We can choose to steer this technology, rather than assume it has a life of its own that we can’t control. </p>
<p>After some thought, I have added my name to the list of signatories of the open letter, which the Future of Life Institute says now includes some 50,000 people. Although a six-month moratorium won’t solve everything, it would be useful: it sets the right intention, to prioritise reflection on benefits and risks over uncritical, accelerated, profit-motivated progress.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1635136281952026625"}"></div></p><img src="https://counter.theconversation.com/content/202944/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Rodolfo Ocampo worked at Google from 2018 to 2020.</span></em></p>
Pausing AI development will give our governments and culture time to catch up with and steer the rush of new technology.
Rodolfo Ocampo, PhD student, Human–AI Creative Collaboration, UNSW Sydney
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/200983
2023-03-08T12:06:26Z
2023-03-08T12:06:26Z
Human genome editing offers tantalizing possibilities – but without clear guidelines, many ethical questions still remain
<figure><img src="https://images.theconversation.com/files/513790/original/file-20230306-28-k1tc0y.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C1936%2C1547&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">DNA editing has the capacity to treat many diseases, but how to do this safely and equitably remains unclear.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/molecules-illustration-royalty-free-image/1148113002">KTSDESIGN/Science Photo Library via Getty Images</a></span></figcaption></figure><p><a href="https://royalsociety.org/science-events-and-lectures/2023/03/2023-human-genome-editing-summit/">The Third International Summit on Human Genome Editing</a>, a three-day conference organized by the Royal Society, the U.K. Academy of Medical Sciences, the U.S. National Academies of Sciences and Medicine and The World Academy of Sciences, was held this week in March 2023 at the Francis Crick Institute in London. Scientists, bioethicists, physicians, patients and others gathered to discuss the latest developments on this technology that lets researchers modify DNA with precision. And a major topic at the summit was <a href="https://royalsociety.org/-/media/events/2023/03/human-genome-editing-summit/third-international-summit-on-human-genome-editing-programme-booklet.pdf?la=en-GB&hash=16DB894FBD02A549B2F090D575C3E92D">how to enforce</a> research policies and ethical principles for human genome editing.</p>
<p>One of the first agenda items was how to regulate human genome editing in China in light of its <a href="https://theconversation.com/crispr-babies-raise-an-uncomfortable-reality-abiding-by-scientific-standards-doesnt-guarantee-ethical-research-108008">misuse in 2018</a>, when scientists modified the DNA of two human embryos before birth to have resistance against HIV infection. The controversy stems from the fact that because the technology is relatively early in its development, and its potential risks have not been reduced or eliminated, editing human embryos in ways they could pass on to their own offspring could lead to a variety of known and unknown adverse complications. The <a href="https://www.statnews.com/2023/03/06/genome-editing-summit-experts-worry-rule-changes-in-china-fall-short/">summit speakers noted</a> that while China has updated its guidelines and laws on human genome editing, it failed to address privately funded research – an issue other countries also face. Many countries, including the U.S., <a href="https://doi.org/10.1038/d41586-023-00625-w">do not have sufficiently robust regulatory frameworks</a> to prevent a repeat of the 2018 scandal.</p>
<p>We are a <a href="https://www.rit.edu/hudsonlab/">biochemist</a> and a <a href="https://www.rit.edu/directory/grssbi-gary-skuse">geneticist</a> who teach and conduct research in genomics and ethics at the Rochester Institute of Technology. As in our classrooms, debate about genome editing continues in the field.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/E8vi_PdGrKg?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Listening to different perspectives about CRISPR could lead to more balanced discussions about how to regulate it.</span></figcaption>
</figure>
<h2>What is genome editing?</h2>
<p>The <a href="https://theconversation.com/the-human-genome-project-pieced-together-only-92-of-the-dna-now-scientists-have-finally-filled-in-the-remaining-8-176138">human genome</a> typically consists of 23 pairs of chromosomes made of approximately 3.2 billion nucleotides – the building blocks of DNA. There are four nucleotides that make up DNA: adenine (A), thymine (T), guanine (G) and cytosine (C). If the genome were a book, each chromosome would be a chapter, each gene on a particular chromosome would be a paragraph and each paragraph would be made of individual letters (A, T, G or C). </p>
<p>One can imagine a book with over 3 billion characters might need editing to correct mistakes that occurred during the writing or copying processes. </p>
<p>Genome editing is a way for scientists to make specific changes to the DNA in a cell or in an entire organism by adding, removing or swapping in or out one or more nucleotides. In people, these changes can be done in somatic cells, those with DNA that cannot be inherited by offspring, or in gamete cells, those containing DNA that can be passed on to offspring. Genome editing of gamete cells, which includes egg or sperm, is controversial, as any changes would be passed on to descendants. Most <a href="https://doi.org/10.1089/crispr.2020.0082">existing guidelines and policies</a> prohibit its use at this time.</p>
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<figcaption><span class="caption">Geneticist Jennifer Doudna is one of the co-inventors of CRISPR/Cas9.</span></figcaption>
</figure>
<h2>How CRISPR works</h2>
<p>In 2012, scientists published a <a href="https://doi.org/10.1126/science.1225829">groundbreaking study</a> demonstrating how CRISPR, or Clustered Regularly Interspaced Short Palindromic Repeats, can be used to accurately change specific DNA sequences.</p>
<p>CRISPR’s natural origins are as a kind of immune response for bacteria. Bacteria that can be infected with viruses have evolved mechanisms to combat them. When a bacterium is infected with a particular virus, it keeps a small piece of the viral DNA sequence called a “spacer” in its own genome. This spacer is an exact match to the viral DNA. Upon subsequent infection, the bacterium is able to use the spacer to recruit a scissorlike protein called Cas9 that can sever new viral DNA attempting to integrate into the bacterium’s genome. This cut to the genetic material prevents the virus from replicating and killing its bacterial host.</p>
<p>After this discovery, scientists were able to fine-tune the system in the lab to be highly precise. They can sever DNA from a variety of cells, including human cells, at a specific location in the genome and subsequently edit it by adding, removing or swapping nucleotides. This is similar to adding or removing letters and words from a book. </p>
<p>This technology has the potential to treat diseases that have genetic origins. One of the summit’s sessions covered CRISPR’s ongoing experimental use to treat patients with <a href="https://doi.org/10.1056/NEJMoa2031054">sickle cell anemia and beta-thalassemia</a>, two blood disorders caused by mutations in the genes. Notably, genetic modification to treat sickle cell anemia and beta-thalassemia involves editing somatic cells, not germline cells. But as the summit speakers noted, whether these likely expensive therapies will be <a href="https://www.statnews.com/2023/03/07/crispr-sickle-cell-access/">accessible to the people who need them most</a>, especially in low- and middle-income countries, is a problem that requires changes to how treatments are sold.</p>
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<figcaption><span class="caption">Scientists have been testing ways to use CRISPR/Cas9 to treat sickle cell anemia.</span></figcaption>
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<h2>Ethics of human genome editing</h2>
<p><a href="https://doi.org/10.1016%2Fj.jmb.2018.05.044">Many questions remain</a> concerning the safety of genome editing, along with its potential to promote eugenics and exacerbate inequities and inequality.</p>
<p>A number of the summit’s sessions involved discussion on the ethics and regulation of the use of this tool. While the landmark 1979 <a href="https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html">Belmont Report</a> outlined several ethical pillars to guide human research in the U.S., it was published before human genome editing was developed. In 2021, the World Health Organization <a href="https://www.who.int/news/item/12-07-2021-who-issues-new-recommendations-on-human-genome-editing-for-the-advancement-of-public-health">issued recommendations on human genome editing</a> as a tool to advance public health. There is <a href="https://doi.org/10.1146/annurev-genom-111320-091930">no current international law</a> governing human genome editing. </p>
<p>There is <a href="https://www.pewresearch.org/internet/2022/03/17/americans-are-closely-divided-over-editing-a-babys-genes-to-reduce-serious-health-risk/">still a debate</a> regarding how to use this technology. Some people equate genome editing to interfering with the work of God and argue that it shouldn’t be used at all, while others recognize its potential value and weigh that against its potential risks. The latter focuses on the fundamental question of <a href="https://www.scientificamerican.com/article/the-dark-side-of-crispr/">where to draw the line</a> between which applications are considered acceptable and which are not. For example, some people will agree that using genome editing to modify a defective gene that may lead to an infant’s death if untreated is acceptable. But these same people may frown upon the use of genome editing to ensure that an unborn child has specific physical features such as blue eyes or blond hair.</p>
<p>Nor is there consensus about <a href="https://doi.org/10.1001/jama.2022.13468">what diseases</a> are desirable targets. For example, it may be acceptable to modify a gene to prevent an infant’s death but not acceptable to modify one that prevents a disease later in life, such as the gene responsible for <a href="https://www.mayoclinic.org/diseases-conditions/huntingtons-disease/symptoms-causes/syc-20356117">Huntington’s disease</a>.</p>
<p>The potential for positive applications of human genome editing is both numerous and tantalizing. But establishing informed regulatory legislation everyone can agree on is and will continue to be a challenge. Conferences such as the human genome editing summit are one way to continue important discussions and educate the scientific community and the public on the benefits and risks of genome editing.</p><img src="https://counter.theconversation.com/content/200983/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Andre Hudson receives funding from the National Institutes of Health</span></em></p><p class="fine-print"><em><span>Gary Skuse has received funding from the National Science Foundation. </span></em></p>
Following the controversial births of the first gene-edited babies, a major focus of the Third International Summit on Human Genome Editing was responsible use of CRISPR.
André O. Hudson, Interim Dean/Professor-College of Science, Rochester Institute of Technology
Gary Skuse, Professor of Bioinformatics, Rochester Institute of Technology
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/196387
2022-12-19T19:00:54Z
2022-12-19T19:00:54Z
Can we ethically justify harming animals for research?
<figure><img src="https://images.theconversation.com/files/501796/original/file-20221219-32459-pjqxml.jpeg?ixlib=rb-1.1.0&rect=61%2C35%2C5817%2C3887&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>Neuralink, the biotechnology company co-founded by Elon Musk, has been accused of <a href="https://www.vox.com/future-perfect/2022/12/11/23500157/neuralink-animal-testing-elon-musk-usda-probe">animal cruelty</a> and is under federal investigation in the United States for potential animal welfare violations. </p>
<p>The company has tested its brain-implant technology in animals including monkeys, sheep and pigs. Whistleblowers allege it has killed about 1,500 animals since 2018.</p>
<p>They claim testing was <a href="https://www.reuters.com/technology/musks-neuralink-faces-federal-probe-employee-backlash-over-animal-tests-2022-12-05/">rushed</a>, which caused significant animal suffering and required botched experiments to be repeated – harming more animals than necessary.</p>
<p>This scandal highlights an old but important question: when is it acceptable to harm non-human animals for human ends?</p>
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<em>
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Read more:
<a href="https://theconversation.com/neuralinks-monkey-can-play-pong-with-its-mind-imagine-what-humans-could-do-with-the-same-technology-158787">Neuralink's monkey can play Pong with its mind. Imagine what humans could do with the same technology</a>
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<h2>Moral confusion</h2>
<p>The condemnation of Neuralink suggests many people view animal suffering as a serious moral problem. We find similar attitudes when people are outraged by pet owners neglecting or abusing their pets.</p>
<p>But our responses to animal suffering are complicated. Surveys show many people think at least <a href="https://anzccart.adelaide.edu.au/ua/media/664/attitudes-animal-research-survey-report2.pdf">some forms</a> of animal research are ethically acceptable, such as medical research where alternatives aren’t available. Most people also think it is <a href="https://www.scientificamerican.com/article/meet-the-meat-paradox/">not morally evil</a> to buy a hamburger, animal <a href="https://www.theatlantic.com/magazine/archive/2012/11/slaughterhouse-rules/309113/">welfare concerns</a> aside.</p>
<p>Our attitudes towards animals are confusing – and arguably <a href="https://theconversation.com/the-meat-paradox-how-we-can-love-some-animals-and-eat-others-149">self-serving</a>. We need to think more carefully about how animals ought to be treated. </p>
<h2>Do animals matter?</h2>
<p>In the 17th century, philosopher René Descartes <a href="https://www.open.edu/openlearn/mod/oucontent/view.php?printable=1&id=1864">famously described</a> animals as mere “automata”. He believed they lack a soul and a mind, and are therefore incapable of suffering.</p>
<p>But progress in fields such as ethology and the cognitive sciences has improved our understanding of animal behaviour, and we have come to appreciate animals have rich mental lives. There is now <a href="https://fcmconference.org/img/CambridgeDeclarationOnConsciousness.pdf">scientific consensus</a> that mammals, birds and many others are capable of feeling pain and pleasure.</p>
<p>One might argue that, even if animals can suffer, ethics should only concern how we treat fellow humans since animals are not “one of us”. But this view is unsatisfying. </p>
<p>If somebody were to say it doesn’t matter how we treat people with a different skin colour, because they are not “one of us”, we would (rightly) call them racist. Those who claim the same about animals can be accused of <a href="https://www.bbc.co.uk/ethics/animals/rights/speciesism.shtml">making a similar mistake</a>.</p>
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<a href="https://images.theconversation.com/files/501803/original/file-20221219-12-vepg40.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Two macaque monkeys sit facing each other" src="https://images.theconversation.com/files/501803/original/file-20221219-12-vepg40.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/501803/original/file-20221219-12-vepg40.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/501803/original/file-20221219-12-vepg40.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/501803/original/file-20221219-12-vepg40.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/501803/original/file-20221219-12-vepg40.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/501803/original/file-20221219-12-vepg40.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/501803/original/file-20221219-12-vepg40.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">For decades, macaques have been used to test brain-machine interfaces.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
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<p>Our treatment of animals has come under increasing philosophical scrutiny since the time of Descartes. Some of the most powerful challenges have come from utilitarian philosophers such as <a href="https://plato.stanford.edu/entries/bentham/">Jeremy Bentham</a> (1748-1832) and Peter Singer, whose 1975 book <a href="https://www.penguin.com.au/books/animal-liberation-9781473524422">Animal Liberation</a> was a rallying point for critics of livestock farming and animal research. </p>
<p>But the case for animal welfare isn’t just utilitarian. Thinkers from diverse philosophical traditions share this position. </p>
<h2>Philosophical views on animal welfare</h2>
<p>Philosophers usually think about animal suffering in accordance with one of three moral theories: utilitarianism, deontology and virtue ethics.</p>
<p><strong>Utilitarians</strong> believe we should do what best promotes the overall wellbeing of everybody affected by a choice. They <a href="https://www.utilitarianism.net/guest-essays/utilitarianism-and-nonhuman-animals">typically hold</a> that all suffering matters equally, regardless of who experiences it, or even what species they belong to. </p>
<p>In 1789, <a href="https://daily-philosophy.com/cooper-quotes-bentham-animal-suffering/">Bentham argued</a> that when it comes to animal welfare:</p>
<blockquote>
<p>[…] the question is not, can they reason? Nor, can they talk? But can they suffer?</p>
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<p><strong>Deontologists</strong> emphasise duties and rights over welfare. They maintain we are not morally permitted to violate rights, even when doing so would promote overall wellbeing.</p>
<p>The great deontologist philosopher Immanuel Kant held that humans have rights because of our rationality (which more or less refers to our abilities to reason and make moral decisions). <a href="https://link.springer.com/article/10.1007/s10539-019-9712-0">Kant believed</a> animals aren’t rational and therefore don’t have rights (although <a href="https://link.springer.com/article/10.1007/s10539-019-9712-0">he claimed</a> we should still refrain from mistreating them since, according to him, that might make us more likely to mistreat humans).</p>
<p>Kant’s rejection of animal rights faces two challenges. First, some argue certain intelligent species, such as <a href="https://theconversation.com/happy-the-elephant-was-denied-rights-designed-for-humans-but-the-legal-definition-of-person-is-still-evolving-152410">elephants and chimpanzees</a>, are also rational and hence deserve rights. </p>
<p>Second, many <a href="http://blog.practicalethics.ox.ac.uk/2014/12/christine-korsgaard-on-our-moral-obligations-to-animals-uehiro-lecture-2/">contemporary deontologists</a> argue we should set a less demanding threshold for moral rights. Rather than requiring rationality, they suggest it might be enough for an animal to have desires and interests.</p>
<p><strong>Virtue ethicists</strong> take yet another approach. They think morality is a matter of developing and practising good character traits, such as honesty and compassion, while avoiding traits like dishonesty and cowardice. Virtue ethicists who <a href="https://www.taylorfrancis.com/chapters/edit/10.4324/9780203870150-6/virtue-ethics-defence-animals-rosalind-hursthouse">deal with animal ethics</a> have argued animal experimentation displays and reinforces vices like callousness and cruelty, particularly when research is unlikely to achieve morally important goals.</p>
<h2>Neuralink revisited</h2>
<p>In Australia and the United States, animal research is governed largely by the “<a href="https://www.nhmrc.gov.au/about-us/publications/australian-code-care-and-use-animals-scientific-purposes">three Rs</a>”: directives to <em>replace</em> animal research with other strategies when feasible, <em>reduce</em> the number of animals used as much as possible, and <em>refine</em> experimental techniques to minimise animal pain.</p>
<p>If the reports about Neuralink are correct, the company failed to adhere to these. But what if Neuralink had conducted experiments in line with the three Rs – would this have resolved all ethical concerns? </p>
<p>Probably not. The three Rs are silent on one crucial question: whether the scientific gains from a particular study are great enough to justify the harms that research may inflict.</p>
<p>So long as an experiment is scientifically sound, one could, in principle, follow the three Rs to the letter while still inflicting severe suffering on a great many animals, and with little prospect of benefiting humans. If animals have moral worth, as the utilitarian, deontological and virtue ethical views state, then at least some scientifically sound animal research should not be conducted.</p>
<p>Neuralink has admirable goals, which include curing paralysis, blindness and depression. </p>
<p>But utilitarians might question whether the expected benefits are great enough (or <a href="https://www.technologyreview.com/2020/08/30/1007786/elon-musks-neuralink-demo-update-neuroscience-theater/">likely enough</a>) to outweigh the significant harms to animals. Deontologists might question whether any of the species used have moral rights against being experimented on, particularly intelligent ones such as monkeys and pigs. And virtue ethicists might worry the testing performed involves vices such as callousness.</p>
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<figcaption><span class="caption">Credit: Neuralink.</span></figcaption>
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<h2>Where are we headed?</h2>
<p>Animal research is widely practised in Australia, with more than <a href="https://www.smh.com.au/environment/conservation/millions-of-animals-around-australia-subjected-to-experiments-and-surgery-20160129-gmgown.html">6 million animals</a> reportedly used per year. Some (but not all) of this research involves significant pain and suffering. Mice are the most common animal used, though species such as dogs, cats and non-human primates are also used. </p>
<p>The vast number of lives at stake mean it is imperative to get the ethics right. </p>
<p>This means developing a more comprehensive set of principles for animal research than the three Rs: one that will help us more effectively balance scientific benefit against harms to research animals. At least among philosophers, this work is <a href="https://link.springer.com/book/10.1007/978-3-319-89300-6">already</a> <a href="https://academic.oup.com/ilarjournal/article/60/3/308/5584414?l">under way</a>.</p>
<p>It might also involve revisiting the question of when (if ever) certain species should be used in research. Australia imposes <a href="https://www.nhmrc.gov.au/about-us/resources/use-non-human-primates-scientific-purposes">special restrictions</a> on the use of non-human primates. Other jurisdictions have banned or considered banning <a href="https://www.nature.com/articles/nm1010-1057a">ape research</a>. What other intelligent species ought to receive additional protections?</p>
<p>We need to look beyond the three Rs for a full assessment of the ethics of animal research – both for Neuralink and beyond.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-is-ethical-animal-research-a-scientist-and-veterinarian-explain-190876">What is ethical animal research? A scientist and veterinarian explain</a>
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</p>
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<img src="https://counter.theconversation.com/content/196387/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Julian Koplin receives funding from Ferring Pharmaceuticals. </span></em></p>
Although there are rules that govern animal research, they don’t answer one important question: when are the gains from research enough to justify the harms it may inflict?
Julian Koplin, Lecturer in Bioethics, Monash University & Honorary fellow, Melbourne Law School, Monash University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/190876
2022-11-23T13:19:17Z
2022-11-23T13:19:17Z
What is ethical animal research? A scientist and veterinarian explain
<figure><img src="https://images.theconversation.com/files/493593/original/file-20221104-24-tgu2zn.jpg?ixlib=rb-1.1.0&rect=23%2C17%2C1972%2C1478&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Animal research's benefits are clear -- but public awareness of what it involves is not.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/woman-wearing-boiler-suit-and-mask-standing-in-room-royalty-free-image/200399533-001?phrase=%22woman%20wearing%20boiler%20suit%22&adppopup=true">Javier Pierini/DigitalVision via Getty Images</a></span></figcaption></figure><p>A <a href="https://www.reuters.com/world/europe/switzerland-vote-becoming-first-nation-ban-animal-testing-2022-02-13/">proposed measure</a> in Switzerland would have made that country the first to ban medical and scientific experimentation on animals. It failed to pass in February 2022, with only 21% of voters in favor. Yet globally, <a href="https://www.congress.gov/bill/117th-congress/house-bill/8699?s=1&r=8">including in the United States</a>, there is concern about whether animal research is ethical.</p>
<p>We are scientists who support ethical animal research that reduces suffering of humans and animals alike by helping researchers <a href="https://fbresearch.org/medical-advances/animal-research-achievements/">discover the causes of disease and how to treat it</a>. One of us is a <a href="https://scholar.google.com/citations?user=JxIoO1sAAAAJ&hl=en&oi=ao">neuroscientist</a> who studies <a href="https://www.apa.org/ptsd-guideline/treatments/prolonged-exposure">behavioral treatments</a> and <a href="https://doi.org/10.1038/s41398-022-01952-8">medications</a> for people with post-traumatic stress disorder – treatments made possible by <a href="https://doi.org/10.1016%2Fj.nlm.2013.11.014">research with dogs and rodents</a>. The other is a <a href="https://www.enprc.emory.edu/research/divisions/animal_resources/Stammen_Rachelle_L.html">veterinarian</a> who cares for laboratory animals in research studies and trains researchers on how to interact with their subjects. </p>
<p>We both place high importance on ensuring that animal research is conducted ethically and humanely. But what counts as “ethical” animal research in the first place?</p>
<h2>The 4 R’s of animal research</h2>
<p>There is no single standard definition of ethical animal research. However, it broadly means the humane care of research animals – from their acquisition and housing to the study experience itself.</p>
<p>Federal research agencies follow <a href="https://olaw.nih.gov/policies-laws/gov-principles.htm">guiding principles</a> in evaluating the use and care of animals in research. One is that the research must increase knowledge and, either directly or indirectly, have the potential to benefit the health and welfare of humans and other animals. Another is that only the minimum number of animals required to obtain valid results should be included. Researchers must use procedures that minimize pain and distress and maximize the animals’ welfare. They are also asked to consider whether they could use nonanimal alternatives instead, such as mathematical models or computer simulations.</p>
<p>These principles are summarized by the “<a href="https://flexiblelearning.auckland.ac.nz/medsci303/15/1/1/files/overview_of_3rs.pdf">3 R’s” of animal research</a>: reduction, refinement and replacement. The 3 R’s encourage scientists to develop new techniques that allow them to replace animals with appropriate alternatives. </p>
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<img alt="Two men bend over a microscope in an office with big glass walls overlooking water." src="https://images.theconversation.com/files/493596/original/file-20221104-11-6zdg0h.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/493596/original/file-20221104-11-6zdg0h.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/493596/original/file-20221104-11-6zdg0h.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/493596/original/file-20221104-11-6zdg0h.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/493596/original/file-20221104-11-6zdg0h.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/493596/original/file-20221104-11-6zdg0h.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/493596/original/file-20221104-11-6zdg0h.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">L'Oreal Brazil CEO Marcelo Zimet looks at microscope samples at the Episkin laboratory, which has developed alternative methods to animal testing.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/loreal-brazil-ceo-marcelo-zimet-looks-on-a-microscope-news-photo/1240792707?phrase=%22animal%20testing%22%20brazil&adppopup=true">Mauro Pimentel/AFP via Getty Images</a></span>
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<p>Since these guidelines were first disseminated in the <a href="https://caat.jhsph.edu/principles/the-principles-of-humane-experimental-technique">early 1960s</a>, new tools have helped to <a href="https://doi.org/10.1371/journal.pone.0101638">significantly decrease</a> animal research. In fact, since 1985, the number of animals in research has been <a href="https://speakingofresearch.com/facts/statistics/">reduced by half</a>.</p>
<p>A fourth “R” was formalized in the late 1990s: <a href="https://doi.org/10.4103%2F2229-5070.113884">rehabilitation</a>, referring to care for animals after their role in research is complete.</p>
<p>These guidelines are designed to ensure that researchers and regulators consider the costs and benefits of using animals in research, focused on the good it could provide for many more animals and humans. These guidelines also ensure protection of a group – animals – that cannot consent to its own participation in research. There are a number of human groups that cannot consent to research, either, such as infants and young children, but for whom regulated research is still permitted, so that they can <a href="https://philarchive.org/archive/MARART-26">gain the potential benefits from discoveries</a>. </p>
<h2>Enforcing ethics</h2>
<p>Specific <a href="https://www.hopkinsmedicine.org/research/resources/offices-policies/animal-care/">guidelines</a> for ethical animal research are typically established by <a href="https://www.ncbi.nlm.nih.gov/books/NBK24650/">national governments</a>. <a href="https://www.aaalac.org">Independent organizations</a> also provide research standards.</p>
<p>In the U.S., the <a href="http://www.nal.usda.gov/animal-health-and-welfare/animal-welfare-act">Animal Welfare Act</a> protects all warmblooded animals except rats, mice and birds bred for research. Rats, mice and birds are protected – along with fish, reptiles and all other vertebrates – by the <a href="https://olaw.nih.gov/policies-laws/phs-policy.htm">Public Health Service Policy</a>. </p>
<p>Each institution that conducts animal research has an entity called the <a href="https://olaw.nih.gov/resources/tutorial/iacuc.htm">Institutional Animal Care and Use Committee</a>, or IACUC. The IACUC is composed of veterinarians, scientists, nonscientists and members of the public. Before researchers are allowed to start their studies, the IACUC reviews their research protocols to ensure they follow national standards. The IACUC also oversees studies after approval to continually enforce ethical research practices and animal care. It, along with the <a href="https://www.aphis.usda.gov/aphis/ourfocus/animalwelfare/SA_AWA/CT_AWA_Inspections">U.S. Department of Agriculture</a>, accreditation agencies and funding entities, may conduct unannounced inspections.</p>
<p>Laboratories that violate standards may be fined, forced to stop their studies, excluded from research funding, ordered to cease and desist, and have their licenses suspended or revoked. Allegations of misconduct are also investigated by the <a href="https://olaw.nih.gov/home.htm">National Institutes of Health’s Office of Laboratory Animal Welfare</a>.</p>
<p>Above and beyond the basic national standards for humane treatment, research institutions across 47 countries, including the U.S., may seek voluntary accreditation by a nonprofit called the <a href="https://ar.aaalac.org/about/index.cfm">Association for Assessment and Accreditation of Laboratory Animal Care</a>, or AAALAC International. <a href="https://www.unthsc.edu/research/wp-content/uploads/sites/21/Benefits-of-AAALAC-Accreditation.pdf">AAALAC accreditation</a> recognizes the maintenance of high standards of animal care and use. It can also help recruit scientists to accredited institutes, promote scientific validity and demonstrate accountability.</p>
<h2>Principles in practice</h2>
<p>So what impact do these guidelines actually have on research and animals?</p>
<p>First, they have made sure that scientists create protocols that describe the purpose of their research and why animals are necessary to answer a meaningful question that could benefit health or medical care. While computer models and cell cultures can play an important role in some research, others studies, like those on <a href="https://theconversation.com/expanding-alzheimers-research-with-primates-could-overcome-the-problem-with-treatments-that-show-promise-in-mice-but-dont-help-humans-188207">Alzheimer’s disease</a>, need animal models to better capture the complexities of living organisms. The protocol must outline how animals will be housed and cared for, and who will care for and work with the animals, to ensure that they are trained to treat animals humanely. </p>
<p>During continual study oversight, inspectors look for whether animals are provided with housing specifically designed for their species’ behavioral and social needs. For example, mice are given nesting materials to create a <a href="https://med.stanford.edu/animalresearch/animal-care-and-facilities/animal-well-being-at-stanford.html">comfortable environment for living and raising pups</a>. When animals don’t have environmental stimulation, it can alter their <a href="https://doi.org/10.1016/S0166-2236(00)01718-5">brain function</a> – harming not only the animal, but also the science.</p>
<p>Monitoring agencies also consider animals’ distress. If something is known to be painful in humans, it is assumed to be painful in animals as well. Sedation, painkillers or anesthesia must be provided when animals experience more than momentary or slight pain.</p>
<p>For some research that requires assessing organs and tissues, such as the study of heart disease, animals must be euthanized. Veterinary professionals perform or oversee the euthanasia process. Methods must be in compliance with guidelines from the <a href="https://www.avma.org/resources-tools/avma-policies/avma-guidelines-euthanasia-animals">American Veterinary Medical Association</a>, which requires rapid and painless techniques in distress-free conditions. </p>
<p>Fortunately, following their time in research, some animals can be <a href="https://www.hopkinsmedicine.org/research/resources/offices-policies/animal-care/">adopted</a> into <a href="https://homesforanimalheroes.com/">loving homes</a>, and others may be retired to <a href="https://chimphaven.org">havens and sanctuaries</a> equipped with veterinary care, nutrition and enrichment.</p>
<h2>Continuing the conversation</h2>
<p>Animal research benefits both humans and animals. Numerous medical advances exist because they were initially studied in animals – from treatments for <a href="https://www.understandinganimalresearch.org.uk/application/files/7016/4380/3819/medical-advances-and.pdf">cancer</a> and <a href="https://psycnet.apa.org/doi/10.1111/j.1749-6632.1985.tb37592.x">neurodegenerative disease</a> to new techniques for surgery, <a href="https://www.ncbi.nlm.nih.gov/books/NBK218274/">organ transplants</a> and <a href="https://doi.org/10.1093/ilar.49.1.1">noninvasive imaging and diagnostics</a>. </p>
<p>These advances also benefit zoo animals, wildlife and endangered species. Animal research has allowed for the <a href="https://doi.org/10.3201%2Feid1612.100923">eradication of certain diseases in cattle</a>, for example, leading not only to reduced farm cattle deaths and human famine, but also to improved health for wild cattle. <a href="https://nap.nationalacademies.org/read/10089/chapter/7">Health care advances for pets</a> – including <a href="https://doi.org/10.1158/1535-7163.MCT-16-0637">cancer treatments</a>, effective vaccines, nutritional prescription diets and flea and tick treatments – are also available thanks to animal research.</p>
<p>People who work with animals in research have attempted to <a href="https://www.bradglobal.org/">increase public awareness</a> of <a href="https://doi.org/10.1038/s41593-022-01039-z">research standards and the positive effects</a> animal research has had on daily life. However, some have faced harassment and violence from <a href="http://www.sciencedaily.com/releases/2009/09/090915174319.htm">anti-animal research activists</a>. Some of our own colleagues have received death threats.</p>
<p>Those who work in animal research share a deep appreciation for the creatures who make this work possible. For future strides in biomedical care to be possible, we believe that research using animals must be protected, and that animal health and safety must always remain the top priority.</p>
<p><em>Editor’s note: One photo depicting a species that is highly restricted for use in biomedical research has been removed from the article.</em></p><img src="https://counter.theconversation.com/content/190876/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Lana Ruvolo Grasser, Ph.D. is the 2022-2023 American College of Neuropsychopharmacology, Americans for Medical Progress Biomedical Research Awareness Day Fellow. She has previously received funding from the National Institute of Mental Health, Blue Cross Blue Shield Foundation of Michigan, and Wayne State University; none of which has supported the work described herein. She is a member of the Anxiety and Depression Association of America, International Society for Traumatic Stress Studies, International Society for Developmental Psychobiology, and Michigan Society for Neuroscience. Dr. Grasser contributed to this article in her personal capacity. The views expressed are her own and do not necessarily represent the views of the National Institutes of Health or the United States Government. </span></em></p><p class="fine-print"><em><span>Rachelle Stammen works as a Clinical Veterinarian at the Emory National Primate Research Center. She is a member of the American Veterinary Medical Association, American Association of Laboratory Animal Science, Association of Primate Veterinarians, and a Diplomate of the American College of Laboratory Animal Medicine. This work is not affiliated with or reflect the opinions of Emory University or Emory National Primate Research Center. </span></em></p>
Guidelines and regulations weigh the medical and health benefits of animal research with researchers’ ability to ensure humane care of their subjects from start to finish.
Lana Ruvolo Grasser, Postdoctoral Research Fellow in Neuroscience, National Institutes of Health
Rachelle Stammen, Clinical Veterinarian, Emory National Primate Research Center, Emory University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/193306
2022-11-15T02:07:36Z
2022-11-15T02:07:36Z
‘Gain of function’ research can create experimental viruses. In light of COVID, it should be more strictly regulated – or banned
<p>The United Nations Environment Programme recently published a <a href="https://wedocs.unep.org/20.500.11822/40871">scientific review</a> that looks at environmental threats and risks in light of the COVID pandemic. It analyses links between human infectious diseases and nature and what we know about how diseases (zoonoses) can transfer from animals to humans. </p>
<p>The report (which I wrote) argues laboratory procedures (including “gain of function” research) should be recognised as one potential driver of zoonotic “spillover”. </p>
<p>The term “gain of function” applies to the functional consequences of changes in the genetic makeup of an organism, including viruses. Such changes can be harmless, or even beneficial. They can occur naturally, when organisms mutate and evolve. </p>
<p>But experiments to deliberately induce mutations are increasingly done in laboratories. In that context, gain of function generally refers to attempts to confer greater transmission and/or virulence to a virus. </p>
<p>Supporters of such research argue it promises to help us be better prepared for pandemics. They <a href="https://www.technologyreview.com/2021/07/26/1030043/gain-of-function-research-coronavirus-ralph-baric-vaccines/">acknowledge</a> risks, but argue these can be managed by the use of <a href="https://www.nature.com/articles/d41586-022-01209-w">highly regulated</a> secure laboratories. Others maintain that the potential risks are simply too high and this type of research should be <a href="https://www.cidrap.umn.edu/news-perspective/2014/06/commentary-case-against-gain-function-experiments-reply-fouchier-kawaoka">banned</a>. </p>
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Read more:
<a href="https://theconversation.com/why-gain-of-function-research-matters-162493">Why gain-of-function research matters</a>
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<h2>How DNA discoveries led to ‘gain of function’ research</h2>
<p>During the second world war, DNA (and later RNA) was <a href="https://journals.plos.org/plosbiology/article?id=10.1371/journal.pbio.2001197">identified</a> as the key genetic molecule. DNA’s (and RNA’s) structure provides unique “instructions” for every living organism. </p>
<p>Within just three decades “<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5178364/#:%7E:text=Recombinant%20DNA%20technology%20comprises%20altering,via%20appropriate%20vector%20%5B12%5D">recombinant</a>” technology made it possible to splice together genetic material from different species. Today, this can be done with consummate ease. </p>
<p>Numerous benefits followed, such as the insertion of insulin-producing genes into bacteria. This enabled cheaper, <a href="https://doi.org/10.1186/s12934-014-0141-0">large-scale production</a> of this hormone, essential to treat type I diabetes.</p>
<p>A <a href="https://www.grandviewresearch.com/industry-analysis/biologics-market">2019 report</a> valued the market in therapeutics, mostly arising through recombinant genetic technologies, at more than US$315 billion (A$490 billion). The use of crops genetically engineered to <a href="https://doi.org/10.1104/pp.18.01224">resist disease</a> is also increasing.</p>
<p>However, this type of research also sparked debate and concern.</p>
<p>A key figure in this emerging technology was Paul Berg, a biochemist who shared the 1980 Nobel Prize. Berg’s early work focused on modifying the SV-40 virus, known to be involved in <a href="https://doi.org/10.1016/j.coviro.2012.06.004">tumour growth</a>. Berg abandoned an experiment, inserting SV-40 into a bacterium, for fear, expressed by “<a href="https://www.nobelprize.org/uploads/2018/06/berg-lecture.pdf">many colleagues</a>” that the newly created organism might infect humans, causing cancer.</p>
<p>For the next few decades, scientists navigated the complex ethics and developing technology around gene splicing, under increasingly <a href="https://absa.org/about/hist01/">secure conditions</a> to limit foreseeable biohazard risks.</p>
<h2>Bird flu</h2>
<p>Then, in 2011, researchers performed experiments with a bird flu virus called H5N1. The virus killed an alarming percentage of humans <a href="https://doi.org/10.1073/pnas.1121297109">diagnosed</a> with it. Its saving grace was that it had very poor human-to-human transmission.</p>
<p><a href="https://journals.asm.org/doi/full/10.1128/mbio.00379-12">Controversy</a> arose when two teams of researchers explored and found ways to make H5N1 transmissible between mammals. After first genetically modifying H5N1 researchers performing “serial passage” experiments in a mammalian model (ferrets) to see if they could further adapt it for mammalian to transmission. They succeeded. </p>
<p>Although it wasn’t clear the virus would be as deadly in humans, critics worried this new strain might escape (even from highly secure labs) and cause millions of deaths.</p>
<p>These concerns led US authorities to delay the studies’ full publication and to later <a href="https://doi.org/doi/10.1016/S1473-3099(18)30006-9">restrict funding guidelines</a>. This was intended to reduce genetic experiments perceived as risky.</p>
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<a href="https://images.theconversation.com/files/494808/original/file-20221111-26-zqux9w.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="people in bird market hold up dead ducks" src="https://images.theconversation.com/files/494808/original/file-20221111-26-zqux9w.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/494808/original/file-20221111-26-zqux9w.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/494808/original/file-20221111-26-zqux9w.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/494808/original/file-20221111-26-zqux9w.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/494808/original/file-20221111-26-zqux9w.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/494808/original/file-20221111-26-zqux9w.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/494808/original/file-20221111-26-zqux9w.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Tests found the H7N9 flu virus in human infections was 99.4% related genetically to that found in live chickens.</span>
<span class="attribution"><a class="source" href="https://photos-cdn.aap.com.au/Image/20130426000686544576?path=/aap_dev14/device/imagearc/2013/04-26/17/1f/35/aapimage-69talo1qnw18vv8ygbb_layout.jpg">AP</a></span>
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<h2>Bans imposed, lifted and re-imposed</h2>
<p>A brief, voluntary ban on such research was introduced then lifted in 2012. This type of work was generally called “<a href="https://doi.org/10.1007/s10393-012-0768-4">dual use</a>” because it may be intended for good but could be either <a href="https://www.who.int/news-room/questions-and-answers/item/what-is-dual-use-research-of-concern#:%7E:text=Dual%2Duse%20research%20of%20concern%20(DURC)%20describes%20research%20that,including%20engineering%20and%20information%20technology">misused for harm</a> or inflict harm poorly due to bad luck.</p>
<p>However, lapses in US biosecurity in 2014 strengthened the case for <a href="https://doi.org/10.1016/S1473-3099(18)30006-9">a more careful stance</a>. A US ban on funding for such work was imposed later that year. This time it was not voluntary. Also in 2014, the <a href="http://www.cambridgeworkinggroup.org/">Cambridge Working Group declaration</a> called for a global ban on work that might lead to the creation of “potential pandemic pathogens”. </p>
<p>Supporters of unfettered genetic research continued to insist the benefits outweighed the risks. They also said the risks were manageable if research was conducted in highly secure laboratories. In 2017, the US ban was overturned.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1588123825715044352"}"></div></p>
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Read more:
<a href="https://theconversation.com/working-with-dangerous-viruses-sounds-like-trouble-but-heres-what-scientists-learn-from-studying-pathogens-in-secure-labs-161721">Working with dangerous viruses sounds like trouble – but here's what scientists learn from studying pathogens in secure labs</a>
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<h2>Now COVID</h2>
<p>Today, COVID has magnified anxiety around this type of genetic research, irrespective of the pandemic’s <a href="https://theconversation.com/the-covid-lab-leak-theory-is-dead-heres-how-we-know-the-virus-came-from-a-wuhan-market-188163">true origin</a>. </p>
<p>In September, the World Health Organization published a <a href="https://www.who.int/publications/i/item/9789240056107">framework</a> to help scientists mitigate biorisks and govern dual-use research of concern. It recognised that gain of function of concern is a real issue, with potentially catastrophic consequences. Global biosecurity expert Raina MacIntyre has discussed these <a href="https://www.mja.com.au/podcast/217/9/mja-podcasts-2022-episode-39-insiders-guide-pandemics-and-biosecurity-prof-raina">concerns</a> recently. </p>
<p>The National Health and Medical Research Council recently completed a <a href="https://www.nhmrc.gov.au/about-us/publications/gain-function-research-review-report#toc__1">review</a> of Australian gain of function research. Such research relies on the integrity of researchers and that all such work must be done in an appropriately safe environment. Approval is also needed from a central authority. </p>
<p>My ongoing <a href="https://doi.org/10.1016/j.soh.2022.100003">work</a> argues we may be nearing a return to an earlier, more cautious approach to biorisks. In our globally connected context, the <a href="https://theintercept.com/2022/11/01/pandemic-1918-flu-virus-biosafety/">potential risks</a> are just too high. </p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/coronavirus-origins-the-debate-flares-up-but-the-evidence-remains-weak-193143">Coronavirus origins: the debate flares up, but the evidence remains weak</a>
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</em>
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<img src="https://counter.theconversation.com/content/193306/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Colin D. Butler is a member of the Scientific Advisory Committee for Doctors for the Environment, Australia.</span></em></p>
Genetic research is big business and has yielded life-saving treatments. But experts are warning of caution about ‘gain of function’ research that has the pandemic potential.
Colin D. Butler, Honorary Professor, Australian National University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/191343
2022-10-09T19:10:31Z
2022-10-09T19:10:31Z
New ‘ethics guidance’ for top science journals aims to root out harmful research – but can it succeed?
<figure><img src="https://images.theconversation.com/files/487469/original/file-20220930-24-hj7oj4.jpeg?ixlib=rb-1.1.0&rect=6%2C31%2C4191%2C2599&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://unsplash.com/photos/RlOAwXt2fEA">Julia Koblitz / Unsplash</a></span></figcaption></figure><p>The British journal Nature was founded in 1869 and is one of the world’s most influential and prestigious outlets for scientific research. Its publisher, Nature Portfolio (a subsidiary of the academic publishing giant Springer Nature), also publishes <a href="https://www.nature.com/siteindex">dozens of specialised journals</a> under the Nature banner, covering almost every branch of science.</p>
<p>In August, the company published <a href="https://www.nature.com/nature-portfolio/editorial-policies/ethics-and-biosecurity">new ethics guidance</a> for researchers. The new guidance is <a href="https://www.nature.com/articles/d41586-022-03035-6">part</a> of Nature’s “attempt to acknowledge and learn from our troubled deep and recent past, understand the roots of injustice and work to address them as we aim to make the scientific enterprise open and welcoming to all”.</p>
<p>An accompanying <a href="https://www.nature.com/articles/s41562-022-01443-2">editorial</a> argues the ethical responsibility of researchers should include people and groups “who do not participate in research but may be harmed by its publication”. </p>
<p>It also notes that for some research, “potential harms to the populations studied may outweigh the benefit of publication”, and licenses editors to make such determinations. Editors may modify, amend or “correct” articles post-publication. They may also decline to publish, or retract, objectionable content or articles, such as “[s]exist, misogynistic and/or anti-LGBTQ+ content”.</p>
<p>The guidance is correct to say academic freedom, like other freedoms, is not absolute. It’s also legitimate to suggest science can indirectly harm social groups, and their rights may sometimes trump academic freedom. Despite this, some aspects of the new guidance are concerning.</p>
<h2>When science goes wrong</h2>
<p>There’s no doubt science can cause harm, both for its subjects and other groups. Consider an example from the late 19th century. </p>
<p>Harvard professor Edward Clarke proposed that taking part in higher education would cause fertility problems in women, because energy would be diverted from the reproductive system to the brain. </p>
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<img alt="" src="https://images.theconversation.com/files/487432/original/file-20220930-18-y7spf6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/487432/original/file-20220930-18-y7spf6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=1037&fit=crop&dpr=1 600w, https://images.theconversation.com/files/487432/original/file-20220930-18-y7spf6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=1037&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/487432/original/file-20220930-18-y7spf6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=1037&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/487432/original/file-20220930-18-y7spf6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1303&fit=crop&dpr=1 754w, https://images.theconversation.com/files/487432/original/file-20220930-18-y7spf6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1303&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/487432/original/file-20220930-18-y7spf6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1303&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">Edward Clarke’s Sex in Education; or, a Fair Chance for Girls, argued that girls were physically unsuited to education.</span>
<span class="attribution"><a class="source" href="https://en.wikipedia.org/wiki/Edward_Hammond_Clarke#/media/File:Sex_in_Education_-_or_a_Fair_Chance_for_the_Girl.jpg">Wikimedia</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
</figcaption>
</figure>
<p>Clarke’s account, set out in a bestselling book, has been credited with deepening public opposition to universities opening their doors to women. </p>
<p>At first glance, this seems like exactly the kind of objectionable content that Nature’s new guidance says it would seek to amend or retract. </p>
<p>But the problem with Clarke’s account was not the offensive conclusions it drew about women’s capacity for intellectual development, or the discriminatory policies to which it gave support. </p>
<p>After all, suppose he had been right? If attending university really would harm women’s reproductive health, surely they would want to know.</p>
<p>The real problem with Clarke’s work was that it was bad science. Indeed, historian of science Naomi Oreskes <a href="https://books.google.com.au/books?id=zRMCEAAAQBAJ&lpg=PA79&ots=6oFcOphIWy&dq=Feminists%20in%20the%20late%20nineteenth%20century%20found%20Clarke%E2%80%99s%20agenda%20transparent%20and%20his%20non-empirical%20methodology%20ripe%20for%20attack.&pg=PA79#v=onepage&q=Feminists%20in%20the%20late%20nineteenth%20century%20found%20Clarke%E2%80%99s%20agenda%20transparent%20and%20his%20non-empirical%20methodology%20ripe%20for%20attack.&f=false">has noted</a>: </p>
<blockquote>
<p>Feminists in the late nineteenth century found Clarke’s agenda transparent and his non-empirical methodology ripe for attack.</p>
</blockquote>
<p>So drawing a particular kind of conclusion about women and girls isn’t what makes for sexist content in science. Nor is it favouring one side or another on gender-related policies. So what is it?</p>
<p>One answer is that it is science in which gendered assumptions bias scientists’ decisions. In the <a href="https://www.jstor.org/stable/40985708">words</a> of historian and philosopher of science Sarah Richardson, this is science in which: </p>
<blockquote>
<p>gendered practices or assumptions in a scientific field prevented researchers from accurately interpreting data, caused inferential leaps, blocked the consideration of alternative hypotheses, overdetermined theory choice, or biased descriptive language.</p>
</blockquote>
<h2>Language and labels</h2>
<p>The guidance also stipulates scientists should “use inclusive, respectful, non-stigmatizing language”. This merits pause for thought. </p>
<p>Scientists should certainly be thoughtful about language, and avoid causing unnecessary offence, hurt or stigma. However, the language must also be scientifically useful and meaningful.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/whats-at-risk-if-scientists-dont-think-strategically-before-talking-politics-63797">What's at risk if scientists don't think strategically before talking politics</a>
</strong>
</em>
</p>
<hr>
<p>For example, it is the nature of categories that some entities or individuals are excluded from them. This should be based on scientific criteria, not political ones. </p>
<p>Or consider the following, offered as part of working definitions in the guidance: </p>
<blockquote>
<p>There is a broad range of gender identities including, but not limited to, transgender, gender-queer, gender-fluid, non-binary, gender-variant, genderless, agender, nongender, bi-gender, trans man, trans woman, trans masculine, trans feminine and cisgender.</p>
</blockquote>
<p>People should of course be able to identify with whatever gender label they prefer. However, “gender identity” is a vague and contested concept, and these labels (and their meanings) are subjectively defined and continue to change rapidly over time. </p>
<p>Labels that are personally meaningful, deeply felt or – as in some cases – part of a political project to dismantle gender binaries, may not necessarily be scientifically useful. </p>
<h2>An invitation to politicking</h2>
<p>By casting a wide range of content as potentially subject to editorial intervention or veto on the grounds of harm, the guidance opens the door to the politicisation of science. Other material caught in that net is:</p>
<blockquote>
<p>content that undermines – or could reasonably be perceived to undermine – the rights and dignities of an individual or human group on the basis of socially constructed or socially relevant human groupings.</p>
</blockquote>
<p>But scientists often do research providing information used to make policies, which will include the bestowing of various rights. The findings of such research can therefore sometimes be unpalatable to groups with economic, political, religious, emotional or other vested interests. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/getting-a-scientific-message-across-means-taking-human-nature-into-account-70634">Getting a scientific message across means taking human nature into account</a>
</strong>
</em>
</p>
<hr>
<p>The guidance opens the door for such groups to try to have findings contrary to those interests “corrected” or retracted. There is not much that can’t be framed as a right, a harm, or an infringement of dignity – all notoriously difficult concepts to define and reach consensus on.</p>
<p>What will determine who is successful in their attempt to have articles amended or retracted? Potential harms will be assessed by journal editors and reviewers – and they will perceive these through the lens of their own prior assumptions, ideologies and value systems. </p>
<p>Editors may also face pressure to avoid tarnishing their journal brand, either in response to, or in anticipation of, social media mobs. After all, Springer Nature ultimately answers to its shareholders.</p>
<h2>The responsibility of editors</h2>
<p>As we know from the work of feminist and other critical scholars, scientific claims based on biased research have harmed marginalised groups in many ways: by explaining away group inequalities in status, power and resources; pathologising; stigmatising; and justifying denial of rights.</p>
<p>There is no contradiction between acknowledging these harms, and also having concerns about the new Nature guidance. </p>
<p>Science journals have an important role to play in facilitating socially responsible science in these sensitive areas.</p>
<p>Journal editors should certainly do all they can to discover and scrutinise hidden biases embedded in research, such as by commissioning reviews from experts with different or critical perspectives. However, they should not second-guess what scientific claims will cause social harm, then exercise a veto.</p><img src="https://counter.theconversation.com/content/191343/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Cordelia Fine 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>
Nature’s recent efforts to redefine the ethical responsibilities of scientists leave a lot to be desired.
Cordelia Fine, Professor, History & Philosophy of Science program, School of Historical & Philosophical Studies, The University of Melbourne
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/191899
2022-10-04T23:15:56Z
2022-10-04T23:15:56Z
What’s next for ancient DNA studies after Nobel Prize honors groundbreaking field of paleogenomics
<figure><img src="https://images.theconversation.com/files/488157/original/file-20221004-14-rupej6.jpg?ixlib=rb-1.1.0&rect=360%2C291%2C4414%2C3088&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Researchers need to be careful not to contaminate ancient samples with their own DNA.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/female-scientist-filling-pipette-trays-at-fume-hood-royalty-free-image/1374565126">Caia Image via Getty Images</a></span></figcaption></figure><p>For the first time, a Nobel Prize recognized the field of anthropology, the study of humanity. Svante Pääbo, a pioneer in the study of ancient DNA, or aDNA, was awarded the 2022 <a href="https://www.nobelprize.org/prizes/medicine/2022/summary/">prize in physiology or medicine</a> for his breathtaking achievements sequencing DNA extracted from ancient skeletal remains and reconstructing early humans’ genomes – that is, all the genetic information contained in one organism.</p>
<p>His accomplishment was once only the stuff of Jurassic Park-style science fiction. But Pääbo and many colleagues, working in large multidisciplinary teams, <a href="https://theconversation.com/nobel-prize-svante-paabos-ancient-dna-discoveries-offer-clues-as-to-what-makes-us-human-191805">pieced together the genomes</a> of our distant cousins, the famous Neanderthals and the more elusive Denisovans, whose existence was not even known until their <a href="https://www.nytimes.com/2010/12/23/science/23ancestor.html">DNA was sequenced</a> from a tiny pinky bone of a child <a href="https://theconversation.com/fresh-clues-to-the-life-and-times-of-the-denisovans-a-little-known-ancient-group-of-humans-110504">buried in a cave in Siberia</a>. Thanks to interbreeding with <a href="https://theconversation.com/ancient-teenager-the-first-known-person-with-parents-of-two-different-species-101965">and among</a> these early humans, their genetic traces <a href="https://theconversation.com/neanderthals-died-out-40-000-years-ago-but-there-has-never-been-more-of-their-dna-on-earth-189021">live on in many of us today</a>, shaping our bodies and our disease vulnerabilities – for example, to <a href="https://doi.org/10.1073/pnas.2026309118">COVID-19</a>.</p>
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<p>The world has learned a startling amount about <a href="https://theconversation.com/six-recent-discoveries-that-have-changed-how-we-think-about-human-origins-190274">our human origins</a> in the last dozen years since Pääbo and teammates’ groundbreaking discoveries. And the field of paleogenomics has rapidly expanded. Scientists have now sequenced <a href="https://theconversation.com/we-sequenced-the-oldest-ever-dna-from-million-year-old-mammoths-155485">mammoths that lived a million years ago</a>. Ancient DNA has addressed questions ranging from the origins of the <a href="https://www.sapiens.org/archaeology/ancient-dna-native-americans/">first Americans</a> to the domestication of <a href="https://www.smithsonianmag.com/smart-news/genetic-sequencing-pinpoints-the-origins-of-the-domestic-horse-180978926/">horses</a> and <a href="https://bigthink.com/the-past/ancient-dogs/">dogs</a>, the spread of <a href="https://theconversation.com/ancient-dna-is-revealing-the-origins-of-livestock-herding-in-africa-114387">livestock herding</a> and our bodies’ adaptations – or lack thereof – to <a href="https://www.newscientist.com/article/2331213-evolution-of-lactose-tolerance-probably-driven-by-famine-and-disease/">drinking milk</a>. Ancient DNA can even shed light on <a href="https://doi.org/10.1073/pnas.2120786119">social questions</a> of marriage, kinship and mobility. Researchers can now sequence DNA not only from the remains of ancient humans, animals and plants, but even from their <a href="https://theconversation.com/digging-deep-dna-molecules-in-ancient-dirt-offer-a-treasure-trove-of-clues-to-our-past-172489">traces left in cave dirt</a>.</p>
<p>Alongside this growth in research, people have been grappling with <a href="https://theconversation.com/ancient-dna-unearths-fascinating-secrets-but-what-about-the-ethics-85186">concerns about the speed</a> with which skeletal collections around the world have been sampled for aDNA, leading to broader conversations about <a href="https://theconversation.com/rights-of-the-dead-and-the-living-clash-when-scientists-extract-dna-from-human-remains-94284">how research should be done</a>. Who should conduct it? Who may benefit from or be harmed by it, and who gives consent? And how can the field become more equitable? As an <a href="https://scholar.google.com/citations?user=3QKcZMoAAAAJ&hl=en&oi=ao">archaeologist</a> who partners with geneticists to study <a href="https://theconversation.com/ancient-dna-helps-reveal-social-changes-in-africa-50-000-years-ago-that-shaped-the-human-story-175436">ancient African history</a>, I see both challenges and opportunities ahead.</p>
<h2>Building a better discipline</h2>
<p>One positive sign: Interdisciplinary researchers are working to establish <a href="https://theconversation.com/why-scholars-have-created-global-guidelines-for-ancient-dna-research-169284">basic common guidelines</a> for research design and conduct.</p>
<p>In North America, scholars have worked to address inequities by designing programs that <a href="https://www.singconsortium.org/">train future generations of Indigenous geneticists</a>. These are now expanding to other historically underrepresented communities in the world. In museums, <a href="https://doi.org/10.1073/pnas.1822038116">best practices for sampling</a> are being put into place. They aim to minimize destruction to ancestral remains, while gleaning the most new information possible.</p>
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<p>But there is a long way to go to develop and enforce community consultation, ethical sampling and data sharing policies, especially in more resource-constrained parts of the world. The divide <a href="https://doi.org/10.3389/fgene.2022.880170">between the developing world and rich industrialized nations</a> is especially stark when looking at where <a href="https://www.google.com/maps/d/viewer?mid=1qwXOKV5uoQntgBsxQrxS01YHpbs&ll=-3.81666561775622e-14%2C6.726945455479381&z=1">ancient DNA labs</a>, funding and research publications are concentrated. It leaves fewer opportunities for scholars from parts of Asia, Africa and the Americas to be trained in the field and lead research. </p>
<p>The field faces structural challenges, such as the relative lack of funding for archaeology and cultural heritage protection in lower income countries, worsened by a <a href="https://theconversation.com/archaeology-is-changing-slowly-but-its-still-too-tied-up-in-colonial-practices-133243">long history of extractive research practices</a> and looming <a href="https://doi.org/10.1038/s41558-022-01280-1">climate change and site destruction</a>. These issues strengthen the regional bias in paleogenomics, which helps explain why some parts of the world – such as Europe – are so well-studied, while Africa – the <a href="https://theconversation.com/ancient-dna-increases-the-genetic-time-depth-of-modern-humans-84716">cradle of humankind</a> and the <a href="https://genomebiology.biomedcentral.com/articles/10.1186/s13059-019-1740-1">most genetically diverse continent</a> – is relatively understudied, with shortfalls in <a href="https://www.theguardian.com/commentisfree/2022/jan/03/africa-humanity-heritage-archaeologist">archaeology</a>, <a href="https://www.nature.com/articles/d44148-022-00051-6">genomics</a> and <a href="https://www.discovermagazine.com/planet-earth/with-ancient-human-dna-africas-deep-history-is-coming-to-light">ancient DNA</a>.</p>
<h2>Making public education a priority</h2>
<p>How paleogenomic findings are interpreted and communicated to the public <a href="https://www.nature.com/articles/s41559-019-0961-8">raises other concerns</a>. Consumers are regularly bombarded with advertisements for personal ancestry testing, <a href="https://blogs.ancestry.com/cm/goodbye-lederhosen-hello-kilt-how-a-dna-test-changed-one-mans-identity-forever/">implying that genetics and identity are synonymous</a>. But lived experiences and decades of scholarship show that biological ancestry and socially defined identities <a href="https://theconversation.com/genetic-ancestry-tests-dont-change-your-identity-but-you-might-98663">do not map so easily onto one another</a>.</p>
<p>I’d argue that scholars studying aDNA have a responsibility to work with educational institutions, like schools and museums, to communicate the meaning of their research to the public. This is particularly important because people with political agendas – <a href="https://www.smithsonianmag.com/history/when-ancient-dna-gets-politicized-180972639/">even elected officials</a> – <a href="https://theconversation.com/white-supremacists-believe-in-genetic-purity-science-shows-no-such-thing-exists-146763">try to manipulate findings</a>.</p>
<p>For example, white supremacists have <a href="https://www.nytimes.com/2018/10/19/us/white-supremacists-science-genetics.html">erroneously equated lactose tolerance with whiteness</a>. It’s a falsehood that would be laughable to many livestock herders from Africa, one of the multiple <a href="https://www.the-scientist.com/daily-news/origins-of-lactase-persistence-in-africa-37810">centers of origin</a> for genetic traits enabling people to digest milk.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/308159/original/file-20191221-11900-1i8iio9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/308159/original/file-20191221-11900-1i8iio9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/308159/original/file-20191221-11900-1i8iio9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=505&fit=crop&dpr=1 600w, https://images.theconversation.com/files/308159/original/file-20191221-11900-1i8iio9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=505&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/308159/original/file-20191221-11900-1i8iio9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=505&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/308159/original/file-20191221-11900-1i8iio9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=635&fit=crop&dpr=1 754w, https://images.theconversation.com/files/308159/original/file-20191221-11900-1i8iio9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=635&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/308159/original/file-20191221-11900-1i8iio9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=635&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 2010 excavation in the East Gallery of Denisova Cave, where the ancient hominin species known as the Denisovans was discovered.</span>
<span class="attribution"><span class="source">Bence Viola. Dept. of Anthropology, University of Toronto</span>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span>
</figcaption>
</figure>
<h2>Leaning in at the interdisciplinary table</h2>
<p>Finally, there’s a discussion to be had about how <a href="https://theconversation.com/ancient-dna-is-a-powerful-tool-for-studying-the-past-when-archaeologists-and-geneticists-work-together-111127">specialists in different disciplines should work together</a>.</p>
<p>Ancient DNA research has grown rapidly, sometimes without sufficient conversations happening beyond the genetics labs. This oversight has provoked a <a href="https://www.nature.com/articles/d41586-018-03773-6">backlash</a> from archaeologists, anthropologists, historians and linguists. Their disciplines have generated decades or even centuries of research that shape ancient DNA interpretations, and their labor makes paleogenomic studies possible.</p>
<p>As an archaeologist, I see the aDNA “revolution” as usefully disrupting our practice. It prompts the archaeological community to reevaluate <a href="https://www.sapiens.org/archaeology/south-africa-repatriation/">where ancestral skeletal collections come from and should rest</a>. It challenges us to publish archaeological data that is sometimes only revealed for the first time in the supplements of paleogenomics papers. It urges us to grab a seat at the table and help drive projects from their inception. We can design research grounded in archaeological knowledge, and may have longer-term and stronger ties to museums and to local communities, whose partnership is key to doing research right.</p>
<p>If archaeologists embrace this moment that Pääbo’s Nobel Prize is spotlighting, and lean in to the sea changes rocking our field, it can change for the better.</p><img src="https://counter.theconversation.com/content/191899/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Mary Prendergast 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>
Thousands of ancient genomes have been sequenced to date. A Nobel Prize highlights tremendous opportunities for aDNA, as well as challenges related to rapid growth, equity and misinformation.
Mary Prendergast, Associate Professor of Anthropology, Rice University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/191430
2022-10-04T15:46:02Z
2022-10-04T15:46:02Z
Five steps every researcher should take to ensure participants are not harmed and are fully heard
<figure><img src="https://images.theconversation.com/files/487476/original/file-20220930-15-6msqnn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Research comes with risks, so participants must be protected and supported as much as possible.</span> <span class="attribution"><span class="source">bangoland/Shutterstock</span></span></figcaption></figure><p>Academic research is not always abstract or theoretical. Nor does it take place in a vacuum. Research in many different disciplines is often grounded in the real world; it aims to understand and address problems that affect people and the environment, such as climate change, poverty, migration or natural hazards.</p>
<p>This means researchers often have to interact with and collect data from a wide range of different people in government, industry and civil society. These are known as research participants.</p>
<p>Over the last 50 years, the relationship between researcher and participant has <a href="https://www.who.int/activities/ensuring-ethical-standards-and-procedures-for-research-with-human-beings">fundamentally changed</a>. Previously, research participants were viewed merely as objects of study. They had little input into the research process or its outcomes. Now, participants are increasingly viewed as collaborative partners and co-creators of knowledge. There are also <a href="https://sajs.co.za/article/view/6349">many ways</a> in which they can engage with researchers. This shift has been largely driven by the need for research that is relevant to today’s world as well as greater recognition of the diversity of people and cultures, and the internet, social media and other communication tools. </p>
<p>In this context, ethical research practices are more important than ever. However, guidelines and standards for research ethics vary between country and institution. Expectations may also vary between disciplines. So, it’s a good time to identify <a href="https://www.tei.org.za/wp-content/uploads/2020/05/Codes_of_Ethics_Handbook_2020_for_WEB.pdf">the key issues</a> in human research ethics that transcend institutional or disciplinary differences. </p>
<h2>Issues to consider</h2>
<p>I am a long-time chair of one my institutions’ research ethics committees, and I do research ethics training for researchers and managers across southern Africa. I have also published on research ethics. Based on this experience and drawing from <a href="https://www.tei.org.za/wp-content/uploads/2020/05/Codes_of_Ethics_Handbook_2020_for_WEB.pdf">other work done on the topic</a>, I suggest there are five critical ethics issues for researchers to consider.</p>
<p><strong>Managing vulnerability:</strong> Research participants, especially in the developing world, may be potentially vulnerable to coercion, exploitation and the exertion of soft power. </p>
<p>This vulnerability may arise because of systemic social, economic, political and cultural inequalities, which are particularly marked in developing countries. And it may be amplified by inequalities in healthcare and education. Some groups in any society – among them minors, people with disabilities, prisoners, orphans, refugees, and those with stigmatised conditions like HIV and AIDS or albinism – may be more vulnerable than others.</p>
<p>This issue can be managed by considering what the participant group is like and by making sure that the data collection process does not increase any existing vulnerabilities. </p>
<p><strong>Obtaining informed consent:</strong> This is a key precondition for participation in any study. Potential participants should first be informed about the nature of the study and the terms and conditions of their participation. That includes details about anonymity, confidentiality and their right to withdraw. </p>
<p>The researcher then needs to ensure that the potential participant understands this information and has the opportunity to ask questions. This should be done in a language and using words that the person can understand. After these steps are taken, the participant can give informed consent. Informal (verbal or any other non-written) consent is more appropriate if participants are not literate or are particularly vulnerable.</p>
<p><strong>Protecting people:</strong> The overarching principle of protecting research participants was articulated in the landmark <a href="https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/index.html">Belmont Report</a>. The report emerged from a national commission in the US in the 1970s to consider research ethics principles. It called for researchers in any study to demonstrate non-maleficence (the principle of not doing harm) and ensure that they protect both participants and their data. </p>
<p>This can be done at different stages through the research process: by decreasing the potential for risk or harm through careful study design; by providing support or counselling services to participants during or after data collection; and by maintaining confidentiality and anonymity in data collection and reporting. Finally, personal data must be protected or de-identified if they are being stored for later analysis.</p>
<p><strong>Managing risk:</strong> Potential sources of risk or harm to participants should, as far as possible, be identified and mitigated when the study is being designed. Risk may arise in any study, either at the time of data collection or afterwards. Sometimes this is unexpected, such as where data collection becomes more dangerous due to <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3571111/">civil unrest</a> or under COVID-19 restrictions.</p>
<p>It is important that researchers provide the details of support or counselling service for participants in case these are needed. Any trade-offs between risk and benefits can be considered through a risk-benefits analysis. But researchers should be realistic about any potential benefits that may result from their study.</p>
<p><strong>Championing human rights:</strong> Researchers have responsibilities: to their disciplines, funders, institutions and participants. This means they should not merely be passive analysers of data. Instead they should be positive role models in society by seeking solutions, advocating for change and upholding human rights and social justice through their actions. </p>
<p>Research activities, especially those involving participants, should address and find solutions for local and global problems. They ought to result in positive societal and environmental outcomes. This should be the context for all types of research activities in a 21st century world.</p>
<h2>Making it happen</h2>
<p>Increasingly, there are national and international codes of research ethics, guiding researchers in different fields. An example is the 2010 <a href="https://wcrif.org/guidance/singapore-statement">Singapore Statement on Research Integrity</a>. It emphasises the principles of honesty, accountability, professional courtesy and fairness, and good stewardship of data. These are the characteristics not just of ethical researchers, but of good researchers too.</p>
<p>These principles and processes should make research less risky and protect the rights of participants by building trust between researchers and participants. These principles can also help in making research more transparent, accountable and equitable – critical in an increasingly divided and unequal world.</p><img src="https://counter.theconversation.com/content/191430/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jasper Knight 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>
Researchers have a number of responsibilities when embarking on their work - not least of all to the participants.
Jasper Knight, Professor of Physical Geography, University of the Witwatersrand
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/190076
2022-09-20T13:09:39Z
2022-09-20T13:09:39Z
African ubuntu can deepen how research is done
<figure><img src="https://images.theconversation.com/files/485073/original/file-20220916-1645-ozj94f.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">New knowledge can sprout from different research approaches.</span> <span class="attribution"><span class="source">boonchai wedmakawand/Getty Images</span></span></figcaption></figure><p>Many academic studies have been centred on Western theories and methodologies for a long time. This approach to research is broadly defined as “<a href="https://www.sciencedirect.com/science/article/abs/pii/S0147176704000458">universalist</a>”. It assumes that “one-size-fits-all” and set norms can be applied across cultures. For example, Western ideas about identity revolve around the individual. That shapes how research is conducted: it focuses mainly on the individual and <a href="https://journals.sagepub.com/doi/abs/10.1177/1077800416657105?journalCode=qixa">emphasises analysis at the individual level</a>. Using Western approaches in non-Western contexts misses out on contextual issues such as power relations between an individual and their community.</p>
<p>But over the past few years there has been <a href="https://link.springer.com/article/10.1007/s10551-019-04338-x">increasing</a> <a href="https://link.springer.com/article/10.1007/s10551-020-04592-4">discussion</a> in research circles about the need to draw on – and apply – more diverse theories of knowledge and approaches in generating knowledge. </p>
<p>“Contextualised” methodologies have been offered as the alternative. This involves taking a region’s particular cultural, demographic, geographical and socio-economic realities into account when conducting research. There’s <a href="https://journals.sagepub.com/doi/10.1177/2631787719879705">a challenge</a> with this approach, too. It may mean that academic research is within the reach of a limited group of people and becomes disconnected from broader academic engagements.</p>
<p>In a recent paper, <a href="https://link.springer.com/article/10.1007/s10551-022-05220-z">we argue</a> that researchers’ decision along neatly divided lines – to choose either universalist or contextualised methodologies – is a false dilemma. We argue that, in researching non-Western contexts such as sub-Saharan Africa, researchers need to fuse conventional Western theories of knowledge and local theories of knowledge. This enables researchers to gain from the rigour associated with conventional methodologies while approaching research from a culturally sensitive philosophical basis. </p>
<p>In our paper, we focus on <a href="https://www.tandfonline.com/doi/abs/10.1080/13645579.2018.1432404">ubuntu</a>. This South African concept embodies the collectivist way of life of many societies in sub-Saharan Africa. The value of ubuntu goes beyond human conduct. It also offers researchers a relational way of knowing that accommodates knowledge of the context that is being studied as well as participants’ values.</p>
<p>We argue that ubuntu can contribute to the way research is carried out, by complementing universalist methodologies. This approach is gaining ground in research circles. For instance, Canadian academics used it to conduct <a href="https://journals.sagepub.com/doi/10.1177/1744987115619207">health research</a> in Mozambique.</p>
<p>The complementary use of ubuntu helps to remove colonial or oppressive lenses from academics’ work. It offers a way for research participants’ values and realities to be recognised and means they are actively involved in creating knowledge about themselves and their contexts.</p>
<h2>Shaping research</h2>
<p>We identified four practical ways that a complementary use of ubuntu can positively shape how research is done. </p>
<p>The first centres on the research agenda. This should be community-based and community-centred. Researchers need to interrogate what their research aims to achieve, in whose interest do they conduct research, and who the research outcomes intend to serve. Bagele Chilisa, a professor of research methodologies, <a href="https://us.sagepub.com/en-us/nam/indigenous-research-methodologies/book241776">points out</a> how efforts to address the AIDS pandemic in many sub-Saharan African societies failed because the research agenda, methodological and analytical tools were driven by donor agencies. Community-centred research allows participants to be equal partners in knowledge generation.</p>
<p>Then there’s access. Accessing the “field” (communities) must be done tactfully. In collectivist societies, a researcher should be aware that consent may go beyond the individual. This may mean seeking the permission (usually verbal) of the individual’s immediate family or community leader. Research may be targeting an individual but it may also be important to obtain consent from their family, for example. Doing so can secure the individual’s full participation: they are given indirect permission to draw examples of their experiences from their community.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-archbishop-tutus-ubuntu-credo-teaches-the-world-about-justice-and-harmony-84730">What Archbishop Tutu's ubuntu credo teaches the world about justice and harmony</a>
</strong>
</em>
</p>
<hr>
<p>The third is power relations. Unequal power relations between the researcher and participants may not be completely eliminated by our complementary approach. But it is a valuable way to remind researchers that their work ought to hinge on ubuntu principles like respect and harmony. This can ensure that research is conducted in a less exploitative and more collaborative manner that values participants’ knowledge and knowledge systems.</p>
<p>Finally, context-sensitive methods are key. Researchers focusing on sub-Saharan Africa should explore and adopt alternative, culturally appropriate knowledge systems and methodologies. Knowledge in collectivistic societies is usually embodied in and transmitted through performative communication modes such as folklore, taboos, totems, and cosmological beliefs. These knowledge modes may not be easily accommodated by Western approaches. Using local knowledge and ways of knowing will expose research to criticism. This can enhance its value and significance. </p>
<h2>A complementary approach</h2>
<p>Our paper contends that there is no “either or” at play when considering how best to study non-Western contexts. The importance of decolonising research and research methodology does not negate the usefulness of conventional, Western methodologies. Rather, knowledge generation should be approached through the lens of the context under study.</p>
<p><em>Professor Smaranda Boroş and Professor Anita Bosch co-authored the research on which this article is based.</em></p><img src="https://counter.theconversation.com/content/190076/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Obaa Akua Konadu-Osei receives funding from the German Academic Exchange Services (DAAD) for providing the scholarship for the doctoral programme on which this article is based.</span></em></p>
Researchers in sub-Saharan Africa ought to fuse conventional Western theories of knowledge and local theories of knowledge.
Obaa Akua Konadu-Osei, Ph.D. Student, Business Management & Administration, Stellenbosch University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/185997
2022-09-12T12:15:12Z
2022-09-12T12:15:12Z
Uncovering the genetic basis of mental illness requires data and tools that aren’t just based on white people – this international team is collecting DNA samples around the globe
<figure><img src="https://images.theconversation.com/files/483545/original/file-20220908-9329-hl0h3j.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C2419%2C1238&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Ethical and equitable scientific collaboration could help increase the genetic diversity of genomic data.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/illustration/scientists-on-world-map-discussing-during-royalty-free-illustration/1322363700">gmast3r/iStock via Getty Images Plus</a></span></figcaption></figure><p>Mental illness is a growing public health problem. In 2019, an estimated <a href="https://www.who.int/news-room/fact-sheets/detail/mental-disorders">1 in 8 people around the world</a> were affected by mental disorders like depression, schizophrenia or bipolar disorder. While scientists have long known that many of these disorders run in families, their genetic basis isn’t entirely clear. One reason why is that the majority of existing genetic data used in research is overwhelmingly from white people.</p>
<p>In 2003, the Human Genome Project generated the first “reference genome” of human DNA from a combination of samples donated by <a href="https://www.statnews.com/2019/03/11/human-reference-genome-shortcomings/">upstate New Yorkers</a>, all of whom were of European ancestry. Researchers across many biomedical fields still use this reference genome in their work. But it doesn’t provide a complete picture of human genetics. Someone with a different genetic ancestry will have a number of <a href="https://www.yourgenome.org/facts/what-is-genetic-variation/">variations</a> in their DNA that aren’t captured by the reference sequence. </p>
<p>When most of the world’s ancestries are not represented in genomic data sets, studies won’t be able to provide a true representation of how diseases manifest across all of humanity. Despite this, ancestral diversity in genetic analyses hasn’t improved in the two decades since the Human Genome Project announced its first results. As of June 2021, <a href="https://doi.org/10.1038/s41591-021-01672-4">over 80%</a> of genetic studies have been conducted on people of European descent. Less than 2% have included people of African descent, even though these individuals have the <a href="https://doi.org/10.1073/pnas.1017511108">most genetic variation</a> of all human populations.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1492867130622193664"}"></div></p>
<p>To uncover the <a href="https://doi.org/10.1038/s41586-022-04556-w">genetic factors</a> driving mental illness, <a href="https://scholar.google.com/citations?user=lWu2u8kAAAAJ&hl=en">I</a>, <a href="https://scholar.google.com/citations?view_op=list_works&hl=en&hl=en&user=iS0IoKgAAAAJ&sortby=pubdate">Sinéad Chapman</a> and our colleagues at the Broad Institute of MIT and Harvard have partnered with collaborators around the world to launch <a href="https://www.broadinstitute.org/stanley-center-psychiatric-research/stanley-global">Stanley Global</a>, an initiative that seeks to collect a more diverse range of genetic samples from beyond the U.S. and Northern Europe, and train the <a href="https://doi.org/10.1038/s41588-022-01095-y">next generation of researchers</a> around the world. Not only does the genetic data lack diversity, but so do the tools and techniques scientists use to sequence and analyze human genomes. So we are implementing a new sequencing technology that addresses the inadequacies of previous approaches that don’t account for the genetic diversity of global populations.</p>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/eFVmhyyWgzw?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Ethically and equitably expanding the diversity of genomics data can help improve care and reduce disparities.</span></figcaption>
</figure>
<h2>Global partnerships for global data</h2>
<p>To study the genetics of psychiatric conditions, researchers use data from <a href="https://www.genome.gov/about-genomics/fact-sheets/Genome-Wide-Association-Studies-Fact-Sheet">genome-wide association studies</a> that compare the genetic variations between people with and without a particular disease. However, these data sets are mostly <a href="https://doi.org/10.1038/s41591-021-01672-4">based on people of European ancestry</a>, largely because research infrastructure and funding for large-scale genetics studies, and the scientists conducting these studies, have historically been concentrated in Europe and the United States.</p>
<p>One way to close this gap is to sequence genetic data from diverse populations. My colleagues and I are working in close partnership with geneticists, statisticians and epidemiologists in 14 countries across four continents to study the DNA of tens of thousands of people of African, Asian and Latino ancestries who are affected by mental illness. We work together to recruit participants and collect DNA samples that are sequenced at the Broad Institute in Massachusetts and shared with all partners for analysis.</p>
<p><iframe id="ZIVeg" class="tc-infographic-datawrapper" src="https://datawrapper.dwcdn.net/ZIVeg/4/" height="400px" width="100%" style="border: none" frameborder="0"></iframe></p>
<p><a href="https://doi.org/10.1038/d41586-021-01795-1">Prioritizing the voices and priorities</a> of local communities and scientists is foundational to our work. All partners have joint ownership of the project, including decision-making and sample and data ownership and control. To do this, we build relationships and trust with the local communities we are studying and the local university leaders and scientists with whom we are partnering. We work to understand local cultures and practices, and adapt our collection methods to ensure study participants are comfortable. For example, because there are different cultural sensitivities around providing saliva and blood samples, we have adapted our practices by location to ensure study participants are comfortable.</p>
<p>We also freely share knowledge and materials with our partners. There is a two-way exchange of information between the Broad Institute and local teams on study progress and results, enabling continual learning, teaching and unity between teams. We strive to meet each other where we are by exchanging practices and training scientists to support the development of locally grown and locally led research programs.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/474777/original/file-20220719-18-mu7fdh.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Researchers in the GINGER program looking at laptop together and smiling" src="https://images.theconversation.com/files/474777/original/file-20220719-18-mu7fdh.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/474777/original/file-20220719-18-mu7fdh.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=454&fit=crop&dpr=1 600w, https://images.theconversation.com/files/474777/original/file-20220719-18-mu7fdh.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=454&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/474777/original/file-20220719-18-mu7fdh.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=454&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/474777/original/file-20220719-18-mu7fdh.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=570&fit=crop&dpr=1 754w, https://images.theconversation.com/files/474777/original/file-20220719-18-mu7fdh.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=570&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/474777/original/file-20220719-18-mu7fdh.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=570&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 Global Initiative for Neuropsychiatric Genetics Education in Research (GINGER) program is focused on training the next generation of scientists.</span>
<span class="attribution"><a class="source" href="https://gingerprogram.org/">Global Initiative for Neuropsychiatric Genetics Education in Research</a>, <a class="license" href="http://creativecommons.org/licenses/by-nc-nd/4.0/">CC BY-NC-ND</a></span>
</figcaption>
</figure>
<p>Our collaboration with African research groups provides a prime example of <a href="https://doi.org/10.1038/s41588-022-01095-y">our model</a>. For example, our African research colleagues are co-leaders on the grants that fund the lab equipment, scientists and other staff for projects based at their study sites. And we help to support the next generation of African geneticists and bioinformaticians through a <a href="https://www.broadinstitute.org/stanley-center-psychiatric-research/neurogap/global-initiative-neuropsychiatric-genetics-education-research-ginger">dedicated training program</a>.</p>
<h2>Analyzing variation</h2>
<p>Collecting samples from more diverse populations is only half of the challenge. </p>
<p>Existing genomic sequencing and analysis technologies do not adequately capture genetic variation across populations from around the world. That’s because these technologies were designed to detect genetic variations based on reference DNA from people of European ancestry, and they <a href="https://doi.org/10.1126/science.abg8871">reduce accuracy</a> when analyzing sequences that aren’t derived from the reference genome. When these tools are applied to genetic data from other populations, they <a href="https://doi.org/10.1016/j.ajhg.2021.03.012">fail to detect much of the rich variation</a> in their genomes. This can lead researchers to miss out on important biomedical discoveries. </p>
<p>To address this issue, we developed an approach to genome sequencing that can detect more genetic variation from populations around the world. It works by sequencing the <a href="https://www.genome.gov/genetics-glossary/Exome">exome</a> – the less than 2% of the genome that codes for proteins – in high detail, as well as sequencing the 98% of the genome that does not code for proteins in less detail.</p>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/gDdoGcGS014?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Different types of sequencing methods have pros and cons.</span></figcaption>
</figure>
<p>This combined approach reduces the trade-offs geneticists often have to make in sequencing projects. <a href="https://medlineplus.gov/genetics/understanding/testing/sequencing/">High-depth whole genome sequencing</a>, which reads through the entire genome multiple times to get detailed data, is too costly to do on a large number of DNA samples. While <a href="https://www.cancer.gov/about-nci/organization/ccg/blog/2019/low-coverage-seq">low-coverage sequencing</a> reduces costs by reading smaller segments of the genome, it may miss some important genetic variation. With our new technology, geneticists can get the best of both worlds: <a href="https://www.broadinstitute.org/blog/what-exome-sequencing">sequencing the exome in depth</a> maximizes the likelihood of pinpointing <a href="https://doi.org/10.1038/s41586-022-04556-w">specific genes</a> that play a role in mental illness, while <a href="https://doi.org/10.1016%2Fj.ajhg.2021.03.012">sequencing the whole genome less in depth</a> allows researchers to process large numbers of whole genomes more cost-effectively.</p>
<h2>Personalizing medicine</h2>
<p>Our hope is that this new technology will allow researchers to sequence large sample sizes from a diverse range of ancestries to capture the full breadth of genetic variation. With a better understanding of the genetics of mental illness, clinicians and researchers will be better equipped to develop new treatments that work for everyone. </p>
<p>Genomic sequencing opened a new era of <a href="https://doi.org/10.1377%2Fhlthaff.2017.1624">personalized medicine</a>, which promises to deliver treatments tailored to each individual person. This can be done only if the genetic variations of all ancestries are represented in the data sets that researchers use to make new discoveries about disease and develop treatments.</p><img src="https://counter.theconversation.com/content/185997/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Hailiang Huang receives funding from the National Institutes of Health and the Brain & Behavior Research Foundation. He is a member of the board of directors with the International Society of Psychiatric Genetics.</span></em></p>
Existing genetic data and sequencing tools are overwhelmingly based on people of European ancestry, which excludes much of the rich genetic variation of the world.
Hailiang Huang, Assistant Professor of Medicine, Harvard University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/181882
2022-05-05T16:38:02Z
2022-05-05T16:38:02Z
Researchers should be assessed on quality not quantity: here’s how
<figure><img src="https://images.theconversation.com/files/460797/original/file-20220502-21-uy3xxu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Researchers need to be assessed on every aspect of their work, no matter where it takes place.</span> <span class="attribution"><span class="source">Photo by marlenefrancia/Shutterstock</span></span></figcaption></figure><p>How do you assess academic researchers for promotion or funding? This question has become ever more central in higher education settings since the 1980s saw substantial growth in investment in research. This significantly increased the number of researchers in the academic workforce and the need to assess their output for employment, promotion and other career advancements.</p>
<p>One response to the need to “scale up” researcher assessments was to introduce publication metrics. These are counts of publications and citations and more complex measures like the <a href="https://libguides.lib.uct.ac.za/tracking_your_academic_footprint/h-index">Hirsch Index</a> and the <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4150161/">Impact Factor</a>. These allowed for relatively easy assessment and comparison of researchers’ careers. They were seen to be both more objective and less time consuming than traditional assessments in which narrative bio sketches were peer reviewed subjectively.</p>
<p>But it’s now widely accepted that the metrics approach to assessment can negatively affect the research system and research outputs. It values quantity over quality and creates perverse incentives that easily lead to <a href="http://rdcu.be/mPZT">questionable research practices</a>. Relying too much on metrics has led to researchers engaging in practices that reduce the trust in, and quality of, research. These include “<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5178044/#">salami slicing</a>” (the spreading of study results over as many publications as possible to ensure numerous publications) and <a href="https://doi.org/10.1017/S0033291718001873">selective reporting</a>. </p>
<p>The pressure to publish also makes researchers vulnerable to predatory journals. Because having many publications and many citations is made so important, the pressure to cut corners is high. This can lead to low quality flawed research that typically overstates effects and downplays limitations. When the findings of that research are implemented harm is done to patients, society or the environment.</p>
<p>Researcher assessment criteria and practices need to be overhauled. We believe the best way to do this is using the <a href="https://wcrif.org/guidance/hong-kong-principles">Hong Kong Principles on Assessing Researchers</a> which emerged from the 6th World Conference on Research Integrity in 2019. The principles were developed to reinforce the need to award researchers for practices that <a href="https://journals.plos.org/plosbiology/article?id=10.1371/journal.pbio.3000737">promote trustworthy research</a>. “Trustworthy research” is relevant, valid and is done in a transparent and accountable way without researchers being distracted by other interests.</p>
<p>These principles move beyond merely questioning the use of research metrics for assessment. Instead they offer alternative indicators to assess researchers and reward behaviour. The idea is to foster research integrity and responsible conduct of research. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/why-developing-countries-are-particularly-vulnerable-to-predatory-journals-86704">Why developing countries are particularly vulnerable to predatory journals</a>
</strong>
</em>
</p>
<hr>
<p>We believe they should be widely adopted. But there are gaps that must be addressed to ensure that the principles don’t leave institutions in the global south, including those in Africa, out in the cold.</p>
<h2>A possible way forward</h2>
<p>The Hong Kong Principles and similar initiatives are gaining traction and changing researcher assessment in many countries and institutions worldwide.</p>
<p>The <a href="https://wcrif.org/guidance/hong-kong-principles">principles</a> are:</p>
<ul>
<li><p>Assess researchers on responsible practices from conception to delivery. That includes the development of the research idea, research design, methodology, execution and effective dissemination.</p></li>
<li><p>Value the accurate and transparent reporting of all research, regardless of the results.</p></li>
<li><p>Value the practices of open science (open research) such as open methods, materials and data.</p></li>
<li><p>Value a broad range of research and scholarship, such as replication, innovation, translation and synthesis.</p></li>
<li><p>Value a range of other contributions to responsible research and scholarly activity, such as peer review for grants and publications, mentoring, outreach and knowledge exchange.</p></li>
</ul>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/how-to-approach-the-revolution-in-scholarly-publishing-116091">How to approach the revolution in scholarly publishing</a>
</strong>
</em>
</p>
<hr>
<p>The principles also include a strong focus on practical implementation, with an understanding that this is not a straightforward process. They call for the sharing of practices around implementation.</p>
<h2>The challenge of implementation</h2>
<p>The movement to change the way researchers are measured should undoubtedly be embraced. But it’s important this be done in a way that doesn’t leave poorly resourced institutions in the global south behind. Even for researchers in the global north, the sorts of new expectations contained in the principles can be frustrating, because they require additional time and resources.</p>
<p>The most obvious example of this is <a href="https://www.nature.com/articles/d41586-022-00724-0">Principle Three</a>: value the practices of open science. A researcher cannot do this alone. They need to be supported by adequate infrastructure, skills, funding, and even discipline-specific training to ensure their data are published in a way that is FAIR (findable, accessible, interoperable and reusable). There are <a href="https://www.nicis.ac.za/dirisa/">some initiatives</a> in Africa to build this kind of infrastructure and skills. But this demand may prove an insurmountable challenge for many African researchers.</p>
<p>African institutions often have a shortage of skilled research management staff to support researchers and ensure their research practices remain in line with international trends. This means researchers from under-resourced institutions may risk losing opportunities as their institutions fail to keep up with changing international demands. </p>
<p>International funding body Wellcome, for instance, <a href="https://wellcome.org/grant-funding/guidance/open-access-guidance/open-access-policy">has stated</a> that all the institutions it funds must publicly commit to responsible and fair research assessment by signing up to the <a href="https://sfdora.org/">San Francisco Declaration on Research Assessment</a>, the <a href="http://www.leidenmanifesto.org/">Leiden Manifesto</a> or an equivalent. Researchers and organisations who do not comply with this policy will be subject to appropriate sanctions. That includes not having new grant applications accepted or their funding being suspended.</p>
<p>African researchers may join international collaborations because they see this as important for their own careers and for accessing the funding needed to unpack important questions within the communities in which they work. Funders and research team leaders from wealthier countries must ensure that the research systems needed to support, realise and adequately acknowledge those from less resourced places are in place. If they are not, capacity development must be funded and implemented as needed. </p>
<h2>A balance</h2>
<p>This issue will be among those tabled at the <a href="https://wcri2022.org/">7th World Conference of Research Integrity</a> in Cape Town, South Africa from 29 May to 1 June. Its theme, Fostering Research Integrity in an Unequal World, offers an ideal opportunity to discuss how best to balance the necessity of changing research assessment practices with the risk to poorer institutions and less resourced researchers. A special symposium will be dedicated to the implementation of the Hong Kong Principles in an African context.</p><img src="https://counter.theconversation.com/content/181882/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Lyn Horn receives funding from US Office of Research Integrity, the South African Department of Science and Innovation and the South African National Research Foundation. This funding is for the 7th World Conference on Research Integrity.
She is currently on the international advisory board, as a research ethics advisor, for four different clinical trials in the field of HIV and TB research. </span></em></p><p class="fine-print"><em><span>Lex Bouter is the chair of the World Conferences on Research Integrity Foundation and one of the cochairs of the 5th, 6th and 7th WCRI . He is also one of the coauthors of the Hong Kong Principles.</span></em></p>
The movement to change the way researchers are measured should undoubtedly be embraced.
Lyn Horn, Director, Office of Research Integrity, University of Cape Town
Lex Bouter, Professor of Methodology and Integrity, Vrije Universiteit Amsterdam
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/166940
2022-04-19T12:20:59Z
2022-04-19T12:20:59Z
How a South African community’s request for its genetic data raises questions about ethical and equitable research
<figure><img src="https://images.theconversation.com/files/447331/original/file-20220218-43570-jbyp9t.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C2941%2C1959&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Many researchers are interested in the genetic history of the Khoe-San.</span> <span class="attribution"><span class="source">Dana Al-Hindi</span>, <a class="license" href="http://creativecommons.org/licenses/by-nc-nd/4.0/">CC BY-NC-ND</a></span></figcaption></figure><p>Scientists believe Africa is where <a href="https://www.pbs.org/newshour/science/cradle-of-modern-human-life-found-in-botswana-maybe">modern humans first emerged</a>. For the past decade, our team of <a href="https://scholar.google.com/citations?user=sDUNh9UAAAAJ&hl=en">genetic</a> <a href="http://hennlab.ucdavis.edu/dana-al-hindi.html">researchers</a> from the <a href="http://hennlab.ucdavis.edu/">Henn Lab</a> have worked among the Khoe-San and self-identified “<a href="https://www.semanticscholar.org/paper/What%27s-in-a-name-Racial-categorisations-under-and-Posel/81e1ad38d1f37b37fe1cddd8a81081b378242217">Coloured</a>” communities in South Africa, which comprise multiple ethnic groups in the region, requesting DNA and generating genetic data to help unravel the history and prehistory of southern Africans and their relationship to populations around the world. </p>
<p>While we have learned a great deal from these communities, we have been unable to fulfill a common request: providing them their individual genetic ancestry results. In our attempts to overcome the logistical challenges of providing this information, we’ve grappled with the common question of how to ensure an equitable balance of benefits between researchers and the community they study. What we’ve found is that there is no easy answer. </p>
<h2>The history of the Khoe-San</h2>
<p>Community member requests to see their genetic results came as no surprise. Many South African groups were stripped of their identities and collapsed into one overarching racial category known as “<a href="https://doi.org/10.1016/S1090-9524(03)00007-X">Coloured</a>” during the early 1900s. Early <a href="https://muse.jhu.edu/book/35209">European colonizers</a> initially used this term to refer to indigenous Khoekhoe and San groups long before it was codified by the apartheid government in 1948. It persists today as an ethnic category, broadly encompassing Khoe-San groups, various East African, Indian and Southeast Asian populations brought by the slave trade, and people of mixed ancestry. </p>
<p><a href="https://doi.org/10.1534/genetics.116.187369">We</a> and <a href="https://doi.org/10.1126/science.1227721">other</a> research groups have shown that some Coloured communities are largely descendants of the Khoe and San peoples. Other ancestries present in Coloured communities are from Bantu-speaking populations that migrated into the region from <a href="https://doi.org/10.1093/hmg/ddaa274">western Africa</a> around 1,500 years ago and from <a href="https://doi.org/10.1186/s12915-020-0746-1">Europe</a> a little under 400 years ago. <a href="https://doi.org/10.1186/s12915-020-0746-1">Asian ancestry</a> is also present as a result of the aforementioned slave trade.</p>
<p>The Khoe and San are considered the most <a href="https://doi.org/10.1073/pnas.1017511108">genetically diverse</a> human populations currently known, meaning they have a large amount of genetic differences within and between each community. Though they are distinct groups, they share genetic similarities with each other. As a result, geneticists collectively refer to them as <a href="https://doi.org/10.1038/464487a">Khoe-San</a>, using a hyphen to acknowledge their cultural distinction.</p>
<p>Today, few people identify as Khoe or San in South Africa. Rather, many people call themselves Coloured, though they are deeply aware of the term’s racist legacy. </p>
<h2>Logistical challenges and potential risks</h2>
<p>In our 12 years of fieldwork, we have returned to South Africa on a nearly annual basis to update community-level genetic results. At each visit, most of our participants ask about their personal genetic ancestry results. </p>
<p>But there are several hurdles we face in trying to fulfill their requests. For one, we need to be able to translate scientifically complex data into an accessible and digestible form, a skill that researchers are not always equipped with. Additionally, we must work within restrictions set by <a href="http://www.sun.ac.za/english/faculty/healthsciences/rdsd/Documents/Ethics/DoH%202015%20Ethics%20in%20Health%20Research%20-%20Principles,%20Processes%20and%20Structures%202nd%20Ed.pdf">the local government</a>, which is mediated by the Health Research Ethics Committee at our collaborators’ academic institution, as well as restrictions set by the <a href="http://trust-project.eu/wp-content/uploads/2017/03/San-Code-of-RESEARCH-Ethics-Booklet-final.pdf">South African San Council</a>.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/449876/original/file-20220303-4451-15ykg4f.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Enrolled research participant holding the spitkit during saliva collection" src="https://images.theconversation.com/files/449876/original/file-20220303-4451-15ykg4f.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/449876/original/file-20220303-4451-15ykg4f.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=612&fit=crop&dpr=1 600w, https://images.theconversation.com/files/449876/original/file-20220303-4451-15ykg4f.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=612&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/449876/original/file-20220303-4451-15ykg4f.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=612&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/449876/original/file-20220303-4451-15ykg4f.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=770&fit=crop&dpr=1 754w, https://images.theconversation.com/files/449876/original/file-20220303-4451-15ykg4f.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=770&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/449876/original/file-20220303-4451-15ykg4f.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=770&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Researchers extracted DNA from saliva samples.</span>
<span class="attribution"><span class="source">Dana Al-Hindi</span>, <a class="license" href="http://creativecommons.org/licenses/by-nc-nd/4.0/">CC BY-NC-ND</a></span>
</figcaption>
</figure>
<p>There are also <a href="https://www.ncbi.nlm.nih.gov/books/NBK525077/">potential risks</a> to the participant. Group-level results provide a protective blanket from potential legal or social issues that can arise from individual ancestry results. For example, a participant may learn that their biological father is not who they believed they were, which could sow conflict in the family and unease for the participant. More generally, the participant faces the social risk of being included or excluded from different communities depending on the outcome of the results.</p>
<p>We discussed these potential problems with past participants and found that most community members care little about the risks. Our participants have consistently viewed the option to receive their personal ancestry results as a benefit of taking part in research. They simply want to know who their forefathers were.</p>
<h2>Helicopter research and exploitation</h2>
<p>To fulfill these requests, we’ve partnered with <a href="https://www.23andme.com/">23andMe Inc.</a>, a U.S.-based company that provides at-home genetic testing. One of us previously worked for 23andMe on its ancestry team and continues to maintain a relationship with scientists at the company. When 23andMe launched a <a href="https://blog.23andme.com/23andme-research/23andmes-populations-collaborations/">program in 2018</a> to improve genetic data on underrepresented communities in biomedical and genetic research, we were excited to see an emphasis on local partnerships and community grants. We submitted a successful application, and 23andMe has provided us with funding to conduct this research.</p>
<p>As academic researchers, we don’t always have the right expertise on how to best communicate personal results. Nor do we often have the funds to successfully execute this task. Research grants do not typically provide support for community development, and graduate and postdoctoral researchers lack protected time to do this on top of their other responsibilities. 23andMe, on the other hand, already has the resources and the experience to accessibly communicate personal genomic results to lay people, because that’s its commercial product. Thus, collaborations with for-profit organizations is not uncommon. Along with <a href="https://doi.org/10.1101/2022.02.07.478793">23andMe</a>, academic researchers have also worked with genetic testing companies <a href="https://www.forbes.com/sites/tommywilliams1/2020/02/29/meet-54gene-changing-the-landscape-of-global-dna-by-including-africa/?sh=6a92cbc55abd">54gene</a> and <a href="https://medium.com/variantbio/variant-bio-launches-new-partnership-on-kidney-disease-in-south-africa-ef3657fb4f3d">Variant Bio</a>.</p>
<p>With approval from the research ethics committee of the local university we work with, 23andMe will fund the expenses of our fieldwork and a community grant, in addition to processing our DNA samples in exchange for data access. They plan to use the data to improve African ancestry results for their customers and for their own research projects. </p>
<p>The company made <a href="https://www.bloomberg.com/news/features/2021-11-04/23andme-to-use-dna-tests-to-make-cancer-drugs">over US$50 million</a> in 2021, and its plans to use the genetic data it has accumulated from its customers to develop pharmaceuticals has not been without <a href="https://www.nytimes.com/2021/09/20/opinion/23andme-dna.html">controversy</a> in the U.S. The samples collected in our partnership with 23andMe, however, would not be used to develop new drugs. While our research focuses primarily on broadening scientific knowledge, and 23andMe does make an effort to follow an <a href="https://blog.23andme.com/23andme-research/an-ethical-framework-for-international-research/">ethical framework</a> for collaborations like these, our developing partnership has heightened our concerns about exploitation and what’s known as <a href="https://doi.org/10.1038/d41586-021-01795-1">helicopter research</a>.</p>
<p>Scientists conduct helicopter research when they collect data from developing countries and marginalized communities with little to no involvement from local researchers and community members. Helicopter research also occurs when researchers take data out of the country they collected it from without either providing benefit to or sharing the results with the community.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/HOBlWaH-Owo?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Informed consent is not enough to prevent research from being exploitative.</span></figcaption>
</figure>
<p>San communities are <a href="https://www.smithsonianmag.com/smart-news/san-people-south-africa-issue-code-ethics-researchers-180962615/">no strangers</a> to helicopter research. For example, <a href="https://doi.org/10.1007/978-90-481-3123-5_6">hoodia</a> is a cactus San communities use to suppress appetite during long hunts or famine. Pharmaceutical companies researched and patented this cultural knowledge in 1995 to develop and sell an anti-obesity pill, initially all without San recognition or involvement. If the San were acknowledged at all, they were referred to as a <a href="https://uwapress.uw.edu/book/9780295742175/reinventing-hoodia/">population that no longer existed</a>. After several legal disputes, the San were promised benefits from any production that came out of the project. Though they received <a href="https://www.unl.edu/rhames/courses/current/hoodia.htm">some compensation</a>, it was a fraction of the value they funneled toward the research and <a href="https://uwapress.uw.edu/book/9780295742175/reinventing-hoodia/">nowhere near what was promised</a>.</p>
<p>This has been a recurring issue for the Khoe and San communities, most recently involving the <a href="https://doi.org/10.1038/d41586-019-03374-x">rooibos tea industry</a>. Companies conducted over a century of commercial rooibos farming benefiting from Khoe and San cultural knowledge before finally agreeing to pay 1.5% of what farmers make for unprocessed rooibos to the communities. Because of this, gaining approval from the local university’s ethics committee for our project has been difficult, and understandably so.</p>
<p>To build a more active and transparent relationship with the local community, we are working closely with 23andMe to develop an advisory board of members from local communities. We have held town halls and conducted interviews with locals to ask if they’d still be interested in being a part of this research project if a company became involved. The majority expressed little concern about 23andMe’s involvement and potentially profiting from their genetic information. But history has shown that for study participants around the globe, <a href="https://doi.org/10.1017/S0963180111000259">informed consent</a> has its limitations. It is still difficult to communicate and gauge whether participants, or the <a href="https://www.vox.com/recode/2019/12/13/20978024/genetic-testing-dna-consequences-23andme-ancestry">millions of Americans</a> who have paid 23andMe for genetic testing, fully understand the full extent of the risks involved with giving away their genetic data, both to 23andMe and to us academic researchers.</p>
<p>The company has offered to provide small community grants to help meet local needs, and has also expanded our ability to “<a href="https://www.un.org/en/academic-impact/capacity-building">capacity-build</a>” – that is, to make sure that the knowledge and skills we gain are shared with local institutions. But the question remains whether there is an equitable balance of benefits. Other companies have already promised <a href="https://54gene.com/we-have-launched-a-trust-to-reinvest-5-of-proceeds-from-commercial-drug-discovery-programs-on-african-scientists-and-communities/">long-term benefits</a> by <a href="https://www.variantbio.com/faq">sharing equity and profit</a> with participating communities. Are individual ancestry results and community grants a sufficient and fair exchange against the profits the company will gain from this collaboration?</p>
<h2>Where does this leave us?</h2>
<p>Academic researchers are faced with navigating the many trade-offs that come with industry collaborations. While 23andMe’s participation provides a means to return individual results to the community, it also raises questions about sufficiently equitable benefits. Our research team, local collaborators and 23andMe are all concerned about how to best address the risk of helicopter research, coercion and any unknown risks that may arise from disclosing personal ancestry results. </p>
<p>In an ideal world, researchers would be able to return benefits to the community without involving nonacademic external parties. Integrating practices like returning results to communities within <a href="https://doi.org/10.1371/journal.pcbi.1009277">research grant requirements</a> is one way to ensure that participants are also benefiting from research. Nonprofit small grants dedicated to returning results and community benefit are another. Until then, researchers will continue to make do with the limited resources they have.</p>
<p><em>This article was updated to more accurately reflect how 23andMe will use the collected data.</em></p><img src="https://counter.theconversation.com/content/166940/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Dana Al-Hindi intends to use Dr. Henn's awarded funds from 23andMe Inc. to complete fieldwork and return of results to sampled communities. </span></em></p><p class="fine-print"><em><span>Brenna Henn is a former employee of 23andMe, Inc. and retains shares in the organization. She has received funding from 23andMe to complete research described in this article. </span></em></p>
The South African Khoe-San communities are no strangers to exploitative research. One research team is trying to provide genetic ancestry results to community members. But they still face many challenges.
Dana Al-Hindi, PhD Candidate in Anthropology, University of California, Davis
Brenna Henn, Associate Professor of Anthropology, University of California, Davis
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/174575
2022-04-12T13:21:29Z
2022-04-12T13:21:29Z
Archaeological site along the Nile opens a window on the Nubian civilization that flourished in ancient Sudan
<figure><img src="https://images.theconversation.com/files/457490/original/file-20220411-14-3o5xce.jpeg?ixlib=rb-1.1.0&rect=85%2C0%2C1839%2C1111&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Thousands of years ago, people in this part of Sudan used underground tombs to bury their dead.</span> <span class="attribution"><span class="source">Michele R. Buzon</span>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span></figcaption></figure><p>Circular mounds of rocks dot the desert landscape at the archaeological site of <a href="http://www.tombos.org">Tombos</a> in northern Sudan. They reveal tumuli – the underground burial tombs used at least as far back as 2500 B.C. by ancient inhabitants who called this region <a href="https://www.academia.edu/11464948/Pastoral_States_Toward_a_Comparative_Archaeology_of_Early_Kush">Kush or Nubia</a>. <a href="https://doi.org/10.1002/9781444345940.ch4">As a bioarchaeologist</a> who excavates and analyzes human skeletal remains along with their related grave goods, <a href="https://scholar.google.com/citations?user=LiRCKv8AAAAJ&hl=en&oi=ao">I’ve been working</a> at Tombos for more than 20 years.</p>
<iframe id="vBA2K" class="tc-infographic-datawrapper" src="https://datawrapper.dwcdn.net/vBA2K/" height="400" width="100%" style="border: none; height: 500px;width:320px;float:right;clear:both;margin-left:15px;margin-right:15px" frameborder="0"></iframe>
<p>Discussions about ancient history in Africa are dominated by the rise of Egypt. But there were several societies that rose to great power in the Nile River Valley since the middle of the third millennium B.C., including this often overshadowed neighbor to Egypt’s south. Even though ancient Kush rivaled and, at times, conquered Egypt, there’s been a relative <a href="https://doi.org/10.1093/oxfordhb/9780190496272.013.2">lack of modern attention</a> paid to this civilization. Early 20th century research expanded scholars’ understandings of ancient Kush, but the interpretations had <a href="https://youtu.be/dRL6EDWfqMs">colonial and racist biases</a> that often obscured this civilization’s strengths and achievements.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/456906/original/file-20220407-20-dfw5kx.JPEG?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/456906/original/file-20220407-20-dfw5kx.JPEG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/456906/original/file-20220407-20-dfw5kx.JPEG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/456906/original/file-20220407-20-dfw5kx.JPEG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/456906/original/file-20220407-20-dfw5kx.JPEG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/456906/original/file-20220407-20-dfw5kx.JPEG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/456906/original/file-20220407-20-dfw5kx.JPEG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/456906/original/file-20220407-20-dfw5kx.JPEG?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">Along its length, the Nile has six cataracts – rocky places with shallow, fast moving water. Tombos is at the Third Cataract.</span>
<span class="attribution"><span class="source">Michele R. Buzon</span>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span>
</figcaption>
</figure>
<p><a href="https://www.researchgate.net/profile/Michele-Buzon">I’m co-director</a>, with <a href="https://scholar.google.com/citations?user=ukoSn9kAAAAJ&hl=en&oi=ao">Stuart Tyson Smith</a>, of the excavations at Tombos. These burials tell our archaeological team about many aspects of life and death in this place millennia ago. Just like those living along the Nile River today, ancient people dealt with various challenges including environmental changes, sociopolitical transitions and interactions with other groups. Equally important to our discoveries about the past is sharing our findings with the local community and supporting Sudanese who want to pursue archaeology careers.</p>
<h2>Illuminating life and death at Tombos</h2>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/456900/original/file-20220407-24-1x6h51.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="a tarp shades people working in a rectangular trench cut out of sandy dirt" src="https://images.theconversation.com/files/456900/original/file-20220407-24-1x6h51.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/456900/original/file-20220407-24-1x6h51.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=800&fit=crop&dpr=1 600w, https://images.theconversation.com/files/456900/original/file-20220407-24-1x6h51.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=800&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/456900/original/file-20220407-24-1x6h51.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=800&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/456900/original/file-20220407-24-1x6h51.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1005&fit=crop&dpr=1 754w, https://images.theconversation.com/files/456900/original/file-20220407-24-1x6h51.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1005&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/456900/original/file-20220407-24-1x6h51.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1005&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Members of the research team looking for subterranean structures.</span>
<span class="attribution"><span class="source">Stuart Tyson Smith</span>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span>
</figcaption>
</figure>
<p>The remains of the ancient inhabitants of Tombos reveal information about their <a href="https://doi.org/10.5744/bi.2017.1000">physical activity</a>, as well as <a href="https://doi.org/10.1016/j.ijpp.2014.05.002">infection and nutrition</a>. Conditions such as <a href="https://doi.org/10.1016/j.ijpp.2014.03.003">heart disease</a>, <a href="https://doi.org/10.1371/journal.pone.0090924">cancer</a> and the <a href="https://link.springer.com/book/10.1007/978-3-030-02544-1">effects of hard labor</a> all leave marks on the human body that provide insights into the epidemiology of disease in the past. They help us trace the factors that play a role in health conditions and their social context. For example, we’ve found the remains of an adult woman and child who <a href="https://doi.org/10.1016/j.ijpp.2019.07.006">lived with a growth disorder</a>, which shows that people with physical differences were incorporated into society.</p>
<p>By analyzing the isotopes, or forms of chemical elements, incorporated into inhabitants’ teeth, we’re able to piece together <a href="https://doi.org/10.1002/ajpa.22235">where they may have lived during childhood</a>.</p>
<p>As the team uncovers what lies <a href="https://youtu.be/vl_BJgYSPSo">beneath the ground</a>, we learn about individual <a href="https://doi.org/10.1111/aman.12524">ancient community members</a>. For instance, we’ve found the remains of an older woman who lived into her 60s and experienced arthritis, a younger woman whose burial included a baby, and a middle-aged woman with a basket full of whole and broken small figurines, beads and other items. Discovering people who apparently lived different kinds of lives lets our team create a picture of who populated Tombos when it was thriving.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/456904/original/file-20220407-14-74mpqh.JPEG?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Scientists excavate an underground tomb" src="https://images.theconversation.com/files/456904/original/file-20220407-14-74mpqh.JPEG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/456904/original/file-20220407-14-74mpqh.JPEG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/456904/original/file-20220407-14-74mpqh.JPEG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/456904/original/file-20220407-14-74mpqh.JPEG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/456904/original/file-20220407-14-74mpqh.JPEG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/456904/original/file-20220407-14-74mpqh.JPEG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/456904/original/file-20220407-14-74mpqh.JPEG?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">Research team members excavating a tumulus burial structure.</span>
<span class="attribution"><span class="source">Michele R. Buzon</span>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span>
</figcaption>
</figure>
<p>The tomb structures show us how people wanted to represent themselves and their families publicly after death. We can link body position and the artifacts accompanying the burials to different cultural and religious practices. One well-provisioned <a href="https://issuu.com/sudarchrs/docs/s_n11_smith">burial of a middle-aged man</a> included both a bed and coffin, combining traditional Nubian and Egyptian practices. The tomb also contained bronze bowls, a decorated wooden box, a pile of amulets that were treated as magical objects and a cache of iron weapons, which demonstrate early iron use in Nubia.</p>
<p>We’ve found that when Egyptians ruled Nubians during the New Kingdom empire around 1200 B.C., some immigrant Egyptians and local people selected Egyptian-style pyramid and chamber tombs for their burials. At the same time, some people at Tombos also used the <a href="https://tombos.org/wp-content/uploads/2018/04/Nile-Magazine-No.-13-Apr-May-2018-Tombos_PDF.pdf">local tumulus tomb structure</a> similar to earlier graves in Nubia, showing how much people varied in their choices about burial.</p>
<h2>Involving today’s inhabitants with finds from the past</h2>
<p>Our archaeological team’s ability to successfully build a picture of people from the past relies on active and close engagement with the local community. Our interactions with town residents – through archaeological work, casual conversations over tea and formal presentations of our findings – have shown us that they are proud of the region’s ancient people and wish for themselves and others to know more about them.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/453454/original/file-20220321-14965-1dl1j4r.JPEG?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Seven women stand together in a tree's shade" src="https://images.theconversation.com/files/453454/original/file-20220321-14965-1dl1j4r.JPEG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/453454/original/file-20220321-14965-1dl1j4r.JPEG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/453454/original/file-20220321-14965-1dl1j4r.JPEG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/453454/original/file-20220321-14965-1dl1j4r.JPEG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/453454/original/file-20220321-14965-1dl1j4r.JPEG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/453454/original/file-20220321-14965-1dl1j4r.JPEG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/453454/original/file-20220321-14965-1dl1j4r.JPEG?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">The archaeological team prioritizes sharing their findings with the local community, particularly the women, who are less likely to work at the site as laborers. The author is third from the right.</span>
<span class="attribution"><span class="source">Michele R. Buzon</span>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span>
</figcaption>
</figure>
<p>A recent lecture and discussion that my Sudanese colleague, Remah Abdelrahim Kabashi Ahmed, and I held for the women of Tombos showed us how curious they are about the past as well as the present. Remah, who is training in bioarchaeology, and I answered questions such as: What kind of medicine did people use then? How old was the baby at death? Why did people put a bed and jewelry in their tomb? They notice the use of beds in ancient burials that look similar to those carved in recent times. They ask if we as women find the work physically difficult.</p>
<p>Importantly, they tell us that they want more presentations because their male family members who work at the archaeological site with us don’t share with them what we’ve found. As a result, we’ve expanded our outreach in many ways, including by collaborating with the local schools to produce some <a href="https://tombos.org/educational-posters-2/">teaching materials</a> about archaeology, local history and Tombos site findings. We also hosted a teacher and her students on a <a href="https://tombos.org/conversations-with-local-people-in-tombos-by-tomomi-fushiya/">tour of the site</a> to see our open excavations.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/453455/original/file-20220321-25-kxu7rn.JPEG?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="people cluster around a pit in an arid landscape" src="https://images.theconversation.com/files/453455/original/file-20220321-25-kxu7rn.JPEG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/453455/original/file-20220321-25-kxu7rn.JPEG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/453455/original/file-20220321-25-kxu7rn.JPEG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/453455/original/file-20220321-25-kxu7rn.JPEG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/453455/original/file-20220321-25-kxu7rn.JPEG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/453455/original/file-20220321-25-kxu7rn.JPEG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/453455/original/file-20220321-25-kxu7rn.JPEG?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">A tour of the site by a fifth-grade class is part of the archaeologists’ outreach to the local community.</span>
<span class="attribution"><span class="source">Michele Buzon</span>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span>
</figcaption>
</figure>
<p>We work closely with the Sudanese administrative body that oversees archaeological research, the National Corporation for Antiquities and Museums. But this is not enough. It’s important for foreign researchers to study the past in collaboration with partners from the community and Sudanese academic colleagues. These partnerships are vital steps in working together to create new knowledge about the region’s ancient history and improve upon the exclusionary and racist perspectives of earlier researchers.</p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/456901/original/file-20220407-20-i4bczk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Man stands in deep rectangular hole cut from dusty dirt" src="https://images.theconversation.com/files/456901/original/file-20220407-20-i4bczk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/456901/original/file-20220407-20-i4bczk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=800&fit=crop&dpr=1 600w, https://images.theconversation.com/files/456901/original/file-20220407-20-i4bczk.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=800&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/456901/original/file-20220407-20-i4bczk.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=800&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/456901/original/file-20220407-20-i4bczk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1005&fit=crop&dpr=1 754w, https://images.theconversation.com/files/456901/original/file-20220407-20-i4bczk.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1005&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/456901/original/file-20220407-20-i4bczk.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1005&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Mohamed Faroug Ali in a stone-lined tomb structure.</span>
<span class="attribution"><span class="source">Stuart Tyson Smith</span>, <a class="license" href="http://creativecommons.org/licenses/by-nd/4.0/">CC BY-ND</a></span>
</figcaption>
</figure>
<p>Tombos team member Mohamed Faroug Ali, a Sudanese archaeologist at International University of Africa in Khartoum, led the creation of the <a href="http://www.amsarc.org">American Sudanese Archaeological Research Center</a>, with the goal of encouraging international research and collaboration in Sudan. We’ve run virtual lectures and provided scholarships for Sudanese students pursuing degrees in archaeology. We’re working toward developing a degree program at the International University of Africa.</p>
<p>Our goal is to support training Sudanese so local people – with more direct connections to the ancient civilization we’re studying – can participate in these archaeological projects at all levels. Promoting and practicing ethical research that includes the people who live in the area today is as important to the Tombos team as learning more about the lives of the ancient inhabitants.</p>
<p>[<em>Understand new developments in science, health and technology, each week.</em> <a href="https://memberservices.theconversation.com/newsletters/?nl=science&source=inline-science-understand">Subscribe to The Conversation’s science newsletter</a>.]</p><img src="https://counter.theconversation.com/content/174575/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Michele R. Buzon receives funding from the National Science Foundation and the National Geographic Society. The Sudan National Corporation for Antiquities and Museums permits her archaeological research and related activities. She is a founding member and Treasurer of the American Sudanese Archaeological Research Center.</span></em></p>
Promoting and practicing ethical research that includes the people who live in the area today is as important to the archaeological team as learning more about the lives of the ancient inhabitants.
Michele R. Buzon, Professor of Anthropology, Purdue University
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/169674
2021-11-24T14:31:52Z
2021-11-24T14:31:52Z
Science changes – and so should rational behaviour
<figure><img src="https://images.theconversation.com/files/433398/original/file-20211123-19-14w28o8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">As the pandemic has progressed, so has scientists' understanding of why masks matter and how best to protect against COVID.</span> <span class="attribution"><span class="source">James D. Morgan/Getty Images</span></span></figcaption></figure><p>The world around us, and the way researchers study and understand it, changes all the time. The constant change means that what we know through science also shifts. </p>
<p>Take the airborne nature of SARS-CoV-2: early in the COVID-19 pandemic key advisory groups, such as the World Health Organisation, assumed that respiratory droplets were the dominant mode of transmission. This led to advice on and practices of social distancing, hand-washing, wiping surfaces, wearing plastic face shields, and putting up plastic barriers between customers and servers in shops. </p>
<p>As more research was conducted the evidence emerged that <a href="https://theconversation.com/why-its-important-to-know-how-fluids-move-142123">SARS-CoV-2 is airborne</a>. It can be transmitted both at closer and longer ranges. So, while social distancing remained important, mask wearing and air ventilation became other crucial tools to fight the spread of COVID-19. </p>
<p>This shifting of knowledge can lead to uncertainty for people when making decisions based on evidence. But it can be done, if everyone – from ordinary citizens to journalists reporting on big issues and researchers trying to communicate their findings – accepts that science changes, and behaves accordingly.</p>
<p>Citizens need to develop the habit of asking questions about the research evidence and never taking headlines at face value. Journalists need to be well trained in understanding research, asking critical questions and communicating findings in a way that allows the public to understand the whole picture.</p>
<p>Researchers also need to be better at communicating the value of complete evidence bases over single studies. They need to be honest about the uncertainty within findings, and findings that keep emerging from bodies of evidence. </p>
<p>At the Africa Centre for Evidence, hosted by the University of Johannesburg in South Africa, we conduct research about the use of evidence in decision-making to reduce poverty and inequalities in our country and continent. We have published work about the use of <a href="https://www.tandfonline.com/doi/full/10.1080/0376835X.2014.907537">evidence synthesis as central to decision-making</a>. Our experiences of working with <a href="https://doi.org/10.18546/RFA.01.2.03">governments</a> have underscored the importance of considering the body of evidence when making decisions, instead of single studies. We have also seen how important it is to engage users on what is considered as evidence for use in decision-making. </p>
<h2>One part of the story</h2>
<p>So, why does science shift?</p>
<p>First, because one part of the story is not the whole story. In almost all cases, a single research study can only answer part of the question. And the reliability, validity and ethics of that single piece of research need to be carefully examined to check the accuracy and usefulness of its findings. </p>
<p>A research methodology known as systematic review, or <a href="https://royalsociety.org/topics-policy/projects/evidence-synthesis/">evidence synthesis</a>, has been used for decades to ensure that all reliable research relevant to a specific question is carefully collated to provide a comprehensive and transparent answer. </p>
<p>Any time a decision matters, using a systematic review to inform that decision is far preferable to using a single study. A complete evidence base – a synthesis of many reliable studies – gives a more complete picture. </p>
<p>COVID-19 is one example of how an evidence base can offer a fuller picture than a single study. When the pandemic struck in March 2020, the world sought answers quickly. The early days and months were a scramble for understanding: we needed to know fast how the virus spread, how to avoid infection, and what treatments were effective. As the evidence base has grown, so has our collective understanding and behaviour.</p>
<h2>Dishonesty and bad ethics</h2>
<p>A second reason for shifting science is that, sadly but not surprisingly, scientists can be dishonest. </p>
<p>One recent example is the use of ivermectin as a COVID-19 treatment. Ivermectin is an animal de-wormer that was promoted as a possible treatment for COVID-19. Convincing arguments were made, and anecdotal cases reported, all leading to <a href="https://mg.co.za/health/2021-07-09-people-use-social-media-posts-to-sell-ivermectin-on-the-black-market/">a black market</a> for the drug. </p>
<p>There was even a systematic review which appeared to show the benefits of ivermectin in reducing COVID-19 deaths. </p>
<p>However, <a href="https://www.nature.com/articles/s41591-021-01535-y">on closer critique of the primary data</a> underpinning the synthesis, it was found that the data from a large trial which had been included in the review was fabricated. This <a href="https://www.nature.com/articles/d41586-021-02081-w">invalidated the findings of the review</a>. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/ivermectin-whether-formulated-for-humans-or-horses-is-not-a-treatment-for-covid-19-167340">Ivermectin — whether formulated for humans or horses — is not a treatment for COVID-19</a>
</strong>
</em>
</p>
<hr>
<p>The purported link between the combined measles-mumps-rubella (MMR) vaccine and autism is another example of how the scientific process can result in shifts in findings. A 1998 paper in The Lancet linked the combined MMR vaccine with the onset of autism. This paper has since been <a href="https://www.bmj.com/content/342/bmj.c7452">shown to have been entirely fraudulent</a>, and was retracted by the journal in 2010. The doctor who led the work had his licence to practice withdrawn because of his unethical research. </p>
<p>Several <a href="https://doi.org/10.1002/14651858.CD004407.pub4">systematic reviews</a> have since shown that there is no link between autism and the MMR vaccine. Still, the idea has <a href="https://www.thelancet.com/journals/lanchi/article/PIIS2352-4642(19)30092-6/fulltext">taken root among many parents</a>, who are reluctant to have their children vaccinated against common childhood illnesses. Increasingly frequent <a href="https://www.who.int/news/item/05-12-2019-more-than-140-000-die-from-measles-as-cases-surge-worldwide">outbreaks of measles</a>, to give just one example, have led to thousands of children dying. </p>
<p>Luckily the scientific industry is set up for <a href="https://link.springer.com/article/10.1007/s11192-018-2969-2">analysis, critique and rigorous debate</a>. Proving something scientifically is a process of review by fellow researchers – a culture of critical reflection. </p>
<h2>Embrace uncertainty</h2>
<p>Good science doesn’t eliminate uncertainty: it explains it. Citizens and journalists need to be literate about the nature of science and how to look for bodies of evidence. </p>
<p>Ultimately, it is about deciding what type of information one trusts. If one trusts the scientific method that underpins the development of the cars we drive, then, logically, one should trust that same scientific method that goes into evidence synthesis. </p>
<p>People should learn where to look for, then rely on, carefully collected, reliable bodies of evidence.</p><img src="https://counter.theconversation.com/content/169674/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ruth Stewart receives funding from a wide range of external research funders for her work at the Africa Centre for Evidence. She is affiliated with the the following not-for-profit organisations: Zimbabwean Evidence Informed Policy Network, the Collaboration for Environmental Evidence, Evidence Synthesis International and the South Africa Centre for Evidence. </span></em></p><p class="fine-print"><em><span>Carina van Rooyen receives funding from various external research funders, such as the Green Climate Fund and South Africa's National Research Foundation. She co-directs the South Africa centre of the Collaboration for Environmental Evidence, a UK-registered non-profit organisation.</span></em></p>
Good science doesn’t eliminate uncertainty: it explains it.
Ruth Stewart, Professor: Evidence-Informed Decision-Making, University of Johannesburg
Carina van Rooyen, Senior researcher at the Africa Centre for Evidence, University of Johannesburg
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/171201
2021-11-05T01:12:36Z
2021-11-05T01:12:36Z
The climate crisis gives science a new role. Here’s how research ethics must change too
<p>Young people across the world have taken to the streets again, demanding decision-makers at COP26 <a href="https://www.theguardian.com/us-news/2019/sep/18/greta-thunberg-testimony-congress-climate-change-action">listen to the science</a>. But if science is to live up to these expectations, a fundamental rethinking of research ethics in light of the climate and ecological crises is needed.</p>
<p>The ongoing planetary crises create new ethical dilemmas for researchers. The <a href="https://www.gov.uk/government/publications/universal-ethical-code-for-scientists">three main principles of research ethics</a> – do no harm, integrity, and responsibility – remain relevant to avoid wrongdoing. But these were formulated reactively, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2632196/">in response to scandals in biomedical research</a>, and could not anticipate these new challenges.</p>
<p>We are proposing a move from a negative ethics focused on avoiding harm to a positive research ethics. These new ethics are needed to guide the global scientific community in relation to civil society and politics during the climate and ecological crises.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/why-we-need-engineers-who-study-ethics-as-much-as-maths-161356">Why we need engineers who study ethics as much as maths</a>
</strong>
</em>
</p>
<hr>
<h2>Do no harm</h2>
<p>According to the “do no harm” imperative, researchers have a responsibility to avoid hurting humans or animals directly involved in their research. But what does “do no harm” mean in the midst of climate and ecological crises?</p>
<p>A growing group of scientists question the carbon footprint of academic activities, ranging from <a href="https://link.springer.com/article/10.1057/s41304-019-00220-6">flying to conferences</a> to <a href="https://dl.acm.org/doi/10.1145/3442188.3445922">developing artificial intelligence</a>. The long-term and unpredictable consequences of research have also come back into focus. An example is the debate about the <a href="https://www.carbonbrief.org/geoengineering-carries-large-risks-for-natural-world-studies-show">high risks</a> of <a href="https://www.nytimes.com/2021/10/01/opinion/climate-change-geoengineering.html">geoengineering</a>.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/430125/original/file-20211104-25-1ysuhw2.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Infographic showing main geoengineering methods" src="https://images.theconversation.com/files/430125/original/file-20211104-25-1ysuhw2.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/430125/original/file-20211104-25-1ysuhw2.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=426&fit=crop&dpr=1 600w, https://images.theconversation.com/files/430125/original/file-20211104-25-1ysuhw2.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=426&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/430125/original/file-20211104-25-1ysuhw2.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=426&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/430125/original/file-20211104-25-1ysuhw2.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=535&fit=crop&dpr=1 754w, https://images.theconversation.com/files/430125/original/file-20211104-25-1ysuhw2.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=535&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/430125/original/file-20211104-25-1ysuhw2.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=535&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Despite the superficial appeal of a geoengineering ‘quick fix’, ethical research must consider its risks.</span>
<span class="attribution"><a class="source" href="https://www.climatecentral.org/gallery/graphics/geoengineering_schemes">© Climate Central. Used with permission</a></span>
</figcaption>
</figure>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/a-global-carbon-removal-industry-is-coming-experts-explain-the-problems-it-must-overcome-169175">A global carbon removal industry is coming – experts explain the problems it must overcome</a>
</strong>
</em>
</p>
<hr>
<p>The “do no harm” principle should thus be broadened in two ways:</p>
<ol>
<li><p>it should include humans, animals and ecosystems that are traditionally not considered part of the research process, but can be negatively affected by it</p></li>
<li><p>it should better account for the long-term, indirect or unintended consequences of research projects or new technologies.</p></li>
</ol>
<p>But if averting the climate crisis requires the complete transformation of society <a href="https://www.theguardian.com/environment/2018/oct/08/global-warming-must-not-exceed-15c-warns-landmark-un-report">within ten years</a>, is it enough for research to “do no harm”? Inspired by <a href="https://journals.co.za/doi/pdf/10.10520/AJA1021559X_18">post-colonial approaches to research ethics</a>, we suggest moving beyond this negative principle and towards a positive, regenerative science.</p>
<p>This science would actively contribute to the <a href="https://theconversation.com/four-reasons-why-restoring-nature-is-the-most-important-endeavour-of-our-time-147365">project of regenerating society and ecosystems</a>. It would be motivated by an analysis of the suffering already taking place and acknowledge historical responsibilities and power relations. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/four-reasons-why-restoring-nature-is-the-most-important-endeavour-of-our-time-147365">Four reasons why restoring nature is the most important endeavour of our time</a>
</strong>
</em>
</p>
<hr>
<h2>Act with integrity</h2>
<p>The principle of integrity asks researchers to follow rigorous protocols, disclose conflicts of interest, refrain from manipulating data, and abstain from plagiarism. But can science be rigorous if it overlooks environmental variables?</p>
<p>Some disciplines ignore the predictions of IPCC reports, as well as indications of mass extinction and ecosystem collapse. They also struggle to reflect the <a href="https://books.google.se/books/about/The_Closing_Circle.html?id=lpYwAAAAMAAJ&redir_esc=y">complex and delicate interconnection</a> between humanity and nature in their practical recommendations.</p>
<p>For example, by focusing heavily on GDP growth, mainstream economics portrays our planetary habitat mostly as a resource to use or exploit. The idea of geoengineering also largely rests on an understanding of our life-support systems as a set of disconnected pieces that can be engineered.</p>
<p>Ultimately, “<a href="https://philpapers.org/rec/GARNIE-4">integrity means wholeness</a>”. It implies acknowledging that we are parts of a fragile and interconnected web of life, which we need to preserve. </p>
<p>Researchers should thus account for ecological dimensions in their analyses. They should also interrogate the conception of the humanity-nature relationship that implicitly underpins their work.</p>
<h2>Take responsibility</h2>
<p>According to the “responsibility” principle, research should be relevant to society and communicated to the public. But in a climate crisis, findings can be so dramatic, their implications for society so huge and controversial, that the word “responsibility” takes a new, heavier meaning.</p>
<p>In this context, some scientists do not dare to speak out, fearing to appear biased. As a result, they <a href="https://www.yesmagazine.org/issue/science/2017/02/07/to-my-fellow-climate-scientists-be-human-be-brave-tell-the-truth">fail to influence the public debate</a>.</p>
<p>Others are tempted to adjust their research to political demands. An example is the inclusion of unrealistic amounts of “negative carbon emissions” in climate models to satisfy policymakers. This was <a href="https://theconversation.com/climate-scientists-concept-of-net-zero-is-a-dangerous-trap-157368">criticised</a> for unintentionally providing a scientific cover-up for climate inaction.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/climate-scientists-concept-of-net-zero-is-a-dangerous-trap-157368">Climate scientists: concept of net zero is a dangerous trap</a>
</strong>
</em>
</p>
<hr>
<p>Yet other researchers suggest that <a href="https://e360.yale.edu/features/how_far_can_technology_go_to_stave_off_climate_change">focusing mainly on technological innovation</a> can resolve the ecological crises. It’s a discourse that <a href="https://www.carbonbrief.org/guest-post-how-discourses-of-delay-are-used-to-slow-climate-action">delays action by decreasing the sense of emergency</a> in tackling these crises.</p>
<p>The “responsibility” principle should therefore be enriched in three ways:</p>
<ol>
<li><p>scientists should take their own findings seriously and stand up for their societal implications, even when it is uncomfortable to do so</p></li>
<li><p>researchers should <a href="https://press.princeton.edu/books/hardcover/9780691179001/why-trust-science">defend the scientific process itself</a> from the <a href="https://www.merchantsofdoubt.org/">influence</a> of <a href="https://www.drdavidmichaels.com/books">political and economic interests</a></p></li>
<li><p>scientists should remain humble as to what science can achieve. This means acknowledging the limits to our knowledge of an infinitely complex world, as well as the slow pace and <a href="https://books.google.se/books/about/Thetechnological_Bluff.html?id=FVD7wAEACAAJ&source=kp_book_description&redir_esc=y">unpredictable consequences of technological development</a>.</p></li>
</ol>
<h2>From words to deeds</h2>
<p>The research ethics sketched here need to be further developed. They can then be incorporated into global guidelines for individual researchers, but also for governments, universities and funding agencies.</p>
<p>Academic research will be at the heart of any solution to the climate and ecological crises. Embracing this responsibility and facing these existential threats requires much more from universities than the adoption of sustainability plans.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/climate-change-is-the-most-important-mission-for-universities-of-the-21st-century-139214">Climate change is the most important mission for universities of the 21st century</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/171201/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Emma Elfversson receives funding from the Swedish Research Council and the Swedish Research Council for Sustainable Development (Formas). She is a member of the Swedish Green party (Miljöpartiet). </span></em></p><p class="fine-print"><em><span>Helen Avery receives funding from the Swedish Research Council for Sustainable Development (Formas).</span></em></p><p class="fine-print"><em><span>Alexandre Wadih Raffoul, David Fopp, and Ryan Carolan 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>
Research ethics focus on avoiding wrongdoing, having been developed largely in response to biomedical scandals. Climate change puts the onus on researchers to add ‘do good’ to ‘do no harm’ principles.
Alexandre Wadih Raffoul, PhD Candidate, Department of Peace and Conflict Studies, Uppsala University
David Fopp, Senior Lecturer, Department of Child and Youth Studies, Stockholm University
Emma Elfversson, Post-doctoral Researcher, Department of Peace and Conflict Research, Uppsala University
Helen Avery, Researcher, Centre for Advanced Middle Eastern Studies and Centre for Environmental and Climate Science (CEC), Lund University
Ryan Carolan, PhD Candidate, Swinburne University of Technology
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/169284
2021-10-20T15:29:37Z
2021-10-20T15:29:37Z
Why scholars have created global guidelines for ancient DNA research
<figure><img src="https://images.theconversation.com/files/425679/original/file-20211011-17-e8rw09.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Ancient DNA holds a great deal of valuable information - but it must be researched ethically.</span> <span class="attribution"><span class="source">© Max Planck Institute for Evolutionary Anthropology</span></span></figcaption></figure><p>The field of <a href="https://www.sciencedirect.com/topics/medicine-and-dentistry/ancient-dna">ancient DNA</a> has grown rapidly in recent years, largely thanks to technological advancements. This work involves sampling human remains from long ago and analysing the DNA to understand human and population history, origins and evolution. </p>
<p>As with any scientific research, there are ethical questions to navigate. Some are fairly modern concerns. DNA contains all our genetic and biological information; these data, if unregulated, can be misused for medical and scientific research by anyone, including but not limited to scientists, governments, and big pharmaceutical companies. Other ethical concerns are rooted in history. For centuries, scientists have tested and obtained data on African people as though they were merely <a href="https://jacana.co.za/product/darwins-hunch-science-race-and-the-search-for-human-origins/">specimens, objects and subjects</a>. <a href="https://www.bbc.com/news/world-europe-52151722">These attitudes persist</a>.</p>
<p>These, then, are the key questions for anyone engaged in ancient DNA research: how can Africa’s genomes (and those from other places, especially elsewhere in the global South) be protected while its researchers contribute to <a href="https://www.ft.com/content/eed0555c-5e2b-11ea-b0ab-339c2307bcd4">the human story and understanding human history</a>? What is the most ethical way to do this research? How do scientists, for instance, proceed with obtaining consent from a community or families whose ancestors’ remains are being tested? What should they do when it’s not clear who the human remains descendants or communities are? And, crucially, how can the African continent’s ancient DNA be protected?</p>
<p>This last question is important because of humanity’s origin and deep historical roots in Africa. <a href="https://www.researchgate.net/publication/338960012_DNA_is_the_key_to_unlocking_our_ancient_African_past">African DNA</a> is found in all humans. Studying ancient DNA in Africa is valuable for understanding human evolution, population migrations, and human history locally, regionally and globally. </p>
<p>These questions of ethics have led to a diverse set of 64 scholars from 24 countries who are actively involved in ancient DNA research – myself among them – to develop a set of ethical guidelines for the discipline. These are outlined in our <a href="https://www.nature.com/articles/s41586-021-04008-x">new article</a> in the journal Nature.</p>
<p>Appropriate approaches to working with human ancient DNA differ across world contexts. That’s why so many specialists from varying regions and countries came together to develop these guidelines. They are not so detailed that they can’t be adapted for specific contexts, but are specific enough to offer a level of protection. The countries include Germany, India, Mexico and the US. From the African continent, researchers from Sudan, Kenya and South Africa contributed ideas and suggestions.</p>
<h2>Five guidelines</h2>
<p>My colleagues and I believe that the set of guidelines we’ve created are strong and universally applicable. We’ve committed to applying them in our own work.</p>
<p>The guidelines call for researchers to:</p>
<ol>
<li><p>abide by all regulations in the places where they work and from which the human remains originate </p></li>
<li><p>prepare a detailed plan prior to beginning any study </p></li>
<li><p>minimise damage to human remains </p></li>
<li><p>ensure data are made available following publication to allow critical re-examination of scientific findings </p></li>
<li><p>engage with other stakeholders and ensure respect and sensitivity to stakeholder perspectives.</p></li>
</ol>
<p>Our hope is that these guidelines will ensure ancient DNA research is always conducted to the highest ethical standards. We have also designed them in a way that will, we believe, address the issue of <a href="https://theconversation.com/how-a-partnership-is-closing-the-door-on-parachute-research-in-africa-102217">parachute research</a>. </p>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/425685/original/file-20211011-19-p7qbcg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/425685/original/file-20211011-19-p7qbcg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/425685/original/file-20211011-19-p7qbcg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/425685/original/file-20211011-19-p7qbcg.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/425685/original/file-20211011-19-p7qbcg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/425685/original/file-20211011-19-p7qbcg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/425685/original/file-20211011-19-p7qbcg.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">No matter where it’s done, ancient DNA research must be done ethically.</span>
<span class="attribution"><span class="source">© Max Planck Institute for Evolutionary Anthropology</span></span>
</figcaption>
</figure>
<p>This refers to scientists from wealthy nations swooping into developing ones, collecting samples and data, then heading straight back home to analyse them. There is poor to little coordination with local researchers, scientists and community groups in the country the samples come from – and, ultimately, the resulting research predominantly benefits those in the global North. Historically this is well documented, and <a href="https://theconversation.com/global-health-still-mimics-colonial-ways-heres-how-to-break-the-pattern-121951">today</a> these ideas of testing on Africans are still pervasive. With the rise of ancient DNA research, there’s a risk of parachute research. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/ancient-dna-unearths-fascinating-secrets-but-what-about-the-ethics-85186">Ancient DNA unearths fascinating secrets. But what about the ethics?</a>
</strong>
</em>
</p>
<hr>
<h2>A starting point</h2>
<p>My contributions to the subject follow on from <a href="https://doi.org/10.1038/s41576-020-00285-w">a paper</a> I published in 2020 explaining the robust rules and regulations for DNA studies on the living. I highlighted the gaps in South Africa’s heritage legislation with ancient DNA research and argued they should mirror each other. DNA, whether from the living or the dead, provides a lot of information about both – the implications for this research are far reaching.</p>
<p>In my own research, I hope the guidelines we’ve created will improve communication structures and respect for local community consultation processes and understanding the need for regular feedback and results returning in tangible ways back into community groups. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/skeletons-and-closets-how-one-university-reburied-the-dead-126607">Skeletons and closets: How one university reburied the dead</a>
</strong>
</em>
</p>
<hr>
<p>The guidelines capture the values of transparency and open access data, engagement, respect, dignity and sensitivity that must be central to ancient DNA research.</p>
<p>The hope is that these principles will provide a starting point from which African countries can begin to improve consultation, prevent or lessen parachute research and develop strong local legislation to enshrine ethical ancient DNA research. It is critical that all ancient DNA researchers are held accountable: researchers in African countries need to be careful and responsible with the continent’s genetic material in the same way that those from wealthier countries need to avoid conducting parachute research.</p>
<p>The paper has been translated into more than 20 languages – among them Swahili, isiXhosa, Afrikaans, Arabic, French, German and Portuguese – to ensure that the guidelines are widely accessible.</p><img src="https://counter.theconversation.com/content/169284/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Victoria Gibbon receives funding from the National Research Foundation (NRF) of South Africa their financial assistance towards this research is hereby acknowledged. Opinions expressed, and conclusions arrived at, are those of the author and are not necessarily
attributed to these funding bodies.</span></em></p>
Studying ancient DNA in Africa is valuable for understanding human evolution, population migrations, and human history locally, regionally and globally.
Victoria Gibbon, Associate Professor in Biological Anthropology, Division of Clinical Anatomy and Biological Anthropology, University of Cape Town
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/163240
2021-07-08T19:51:24Z
2021-07-08T19:51:24Z
‘Return to normal’ travel and research may bring hazards to northern, Indigenous communities
<figure><img src="https://images.theconversation.com/files/408311/original/file-20210625-22-xmg7sr.jpg?ixlib=rb-1.1.0&rect=4%2C214%2C3254%2C2218&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Instead of returning to the northern research status quo, researchers should make community health and well-being the top priority. Above: Nain, Nunatsiavut.</span> <span class="attribution"><span class="source">Christina Goldhar</span>, <span class="license">Author provided</span></span></figcaption></figure><p>Throughout the pandemic, many have longed for a “return to normal.” When the threat of COVID-19 subsides, we look forward to resuming our research and travel schedules, and reclaiming the elements of our lives that were disrupted over a year ago. However, for southern-based researchers and travellers, returning to northern, Indigenous communities either for leisure or research fieldwork in summer 2021 is premature. </p>
<p>We are a group of scholars — Indigenous and settler northerners and southern-based researchers — who share a commitment to the development of respectful, <a href="https://doi.org/10.1111/j.1541-0064.2012.00434.x">non-extractive research relationships</a>. We question the harm that some researchers bring with them when they enter northern communities from their southern homes. </p>
<p>The pandemic has underscored many of the systemic injustices experienced by Indigenous peoples and within northern and Indigenous geographies in what is now known as Canada. These include the persistent <a href="https://www.itk.ca/wp-content/uploads/2021/02/20210122-ITK-Systemic-Discrimination-in-the-Provision-of-Healthcare-in-Inuit-Nunangat.pdf">underfunding of health care</a>, <a href="https://theconversation.com/housing-is-health-coronavirus-highlights-the-dangers-of-the-housing-crisis-in-canadas-north-135594">housing</a>, the <a href="http://economics.uwinnipeg.ca/RePEc/winwop/2015-02.pdf">education system</a>, other <a href="https://www.rcinet.ca/eye-on-the-arctic/2019/04/18/infrastructure-canada-north-budget-officer-report/">critical infrastructure such as water and sewage systems and broadband internet</a>, as well as <a href="https://nunatsiaq.com/stories/article/northern-communities-face-one-of-biggest-climate-change-risks-study-says/">the effects of climate change</a>. </p>
<p>All of these place the affected communities at increased risk of the spread and harmful effects of COVID-19. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/410452/original/file-20210708-25-wjhozg.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/410452/original/file-20210708-25-wjhozg.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/410452/original/file-20210708-25-wjhozg.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/410452/original/file-20210708-25-wjhozg.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/410452/original/file-20210708-25-wjhozg.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=565&fit=crop&dpr=1 754w, https://images.theconversation.com/files/410452/original/file-20210708-25-wjhozg.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=565&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/410452/original/file-20210708-25-wjhozg.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=565&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Kuujjuaq, Nunavik.</span>
<span class="attribution"><span class="source">Arielle Frenette</span></span>
</figcaption>
</figure>
<h2>Trauma and living memory</h2>
<p>The legacies of Indian Residential Schools continue in the living memories of survivors (direct and intergenerational) and through trauma that <a href="https://www.ualberta.ca/arts/faculty-news/2021/06-june/indigenous-experts-grapple-with-next-steps-for-site-of-kamloops-residential-school.html">has yet to be met with substantive supports</a> to address the many issues resulting from these genocidal, colonial programs that targeted Indigenous peoples.</p>
<p>The recent recoveries of the remains of Indigenous people <a href="https://theconversation.com/indigenous-lawyer-investigate-discovery-of-215-childrens-graves-in-kamloops-as-a-crime-against-humanity-161941">at the sites of former Indian Residential Schools</a> has retraumatized entire communities. Clearly, the grief and harm caused by these policies <a href="https://theconversation.com/not-in-the-past-colonialism-is-rooted-in-the-present-157395">cannot be contained by the bounds of “history.”</a></p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/amid-more-shocking-residential-schools-discoveries-non-indigenous-people-must-take-action-161965">Amid more shocking residential schools discoveries, non-Indigenous people must take action</a>
</strong>
</em>
</p>
<hr>
<p>The coronavirus pandemic reframes our understanding of the potential <a href="https://yellowheadinstitute.org/2020/03/31/covid-19-and-inuit-nunangat-research-responsibility-infrastructure-inequality/">harm that research can bring to northern communities</a>. It forces us to place the well-being and needs of northern communities ahead of the needs of our research. The pandemic presents us with an opportunity to pause and reflect on these relationships, and to consider how we will maintain these practices of care as we move into a post-pandemic world. </p>
<p>The restrictions of the pandemic have encouraged us to be less wasteful with the knowledge that has already been produced and documented. For example, we have turned to data and other research materials that have not been fully explored due to the drive to always be in search of new questions, new projects and original outcomes. </p>
<p>It has also encouraged us to consider how research capacity within the North can be strengthened and supported by southern researchers, and new partnerships can be fostered, instead of southern researchers travelling North to collect data. </p>
<p>Current research practices are embedded in academic expectations and funding systems. They impose increasing pressure on communities to engage in, and collaborate with research on their territories, and northern Indigenous communities have been collaborating with research for decades. </p>
<p>There is an incredible amount of labour that community members must perform to facilitate even the most hands-off research, while projects often offer little benefit to the community.</p>
<p>As research projects are designed to centre academic priorities, they often fail to meaningfully address community research needs. This results in <a href="https://www.itk.ca/wp-content/uploads/2020/10/ITK-National-Inuit-Strategy-on-Research.pdf">colonial, extractive research relationships</a>, where researchers arrive from outside of a community, extract knowledge, data, labour and expertise for their benefit, and leave.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/410466/original/file-20210708-21-77zb3q.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/410466/original/file-20210708-21-77zb3q.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/410466/original/file-20210708-21-77zb3q.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/410466/original/file-20210708-21-77zb3q.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/410466/original/file-20210708-21-77zb3q.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/410466/original/file-20210708-21-77zb3q.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/410466/original/file-20210708-21-77zb3q.jpeg?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">
<figcaption>
<span class="caption">Makenzie River, N.W.T.</span>
<span class="attribution"><span class="source">Indigenous Consulting Services Inc.</span></span>
</figcaption>
</figure>
<h2>Practices of care</h2>
<p>The pandemic has also offered a moment to consider and respond to the changing landscape of Indigenous research ethics in this country.</p>
<p>Indigenous northerners have long drawn attention to the <a href="http://www.northernpublicaffairs.ca/index/volume-6-issue-1/from-the-credibility-gap-to-capacity-building-an-inuit-critique-of-canadian-arctic-research/">coloniality of research</a> occurring on their homelands and the need to move towards greater degrees of autonomy <a href="https://www.itk.ca/wp-content/uploads/2020/10/ITK-National-Inuit-Strategy-on-Research.pdf">in Indigenous research</a>. Responding to these needs requires considering the harm caused by even the most common “<a href="https://www.acme-journal.org/index.php/acme/article/view/1327">best-practice” research approaches</a>. It requires reconsidering the governance and funding structures that shape northern research. </p>
<p>Approaching research as a conscientious practice of care involves questioning the intent, as well as the various negative effects brought forward by a research agenda. This must be done in a way that reaches beyond ethical considerations or “good intentions.” As we know from Canada’s long history of colonialism, even “good intentions” can be harmful. </p>
<p>Caring means a context-based, selfless and affectionate reflection that takes into account all individuals, communities and environments affected by one’s actions. Community health and well-being must take precedence over research careers and the agendas of funding agencies. Every researcher who chooses not to travel to the North this summer, reduces the risk of bringing COVID-19 and its variants into the community. </p>
<p>In other words, practices of care are not about research, but about all living things involved in the research process and choices of methodology. We argue that, before choosing fieldwork in this early post-pandemic present, researchers must adopt a caring attitude. This means not returning to the northern research status quo, but instead centring community health and well-being, <a href="https://nccdh.ca/blog/entry/climate-change-resilience-part-1">including the climate</a>, in the design and implementation of future research projects. </p>
<p>During the pandemic, the Canadian government has provided funding for Indigenous communities — such as through the <a href="https://www.sac-isc.gc.ca/eng/1585189335380/1585189357198">Indigenous Community Support Fund</a> — to help prevent the spread of COVID-19. While these short-term funding programs are certainly welcome, there is a need for sustained commitments to address the <a href="http://arcticjournal.ca/inuit-forum/addressing-the-inuit-nunangat-infrastructure-gap/">critical gap in social and economic infrastructure</a>. </p>
<p>Advocating for the continued funding of COVID-19-related programming, and a meaningful address of long-standing social and economic infrastructure deficits in northern and Indigenous communities would be a welcome alternative to fieldwork this summer. Ultimately, for southern-based researchers, there is a continued need to maintain distance as a practice of care for the well-being of northerners.</p><img src="https://counter.theconversation.com/content/163240/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Christina Goldhar receives funding from the Pierre Elliott Trudeau Foundation and SSHRC. </span></em></p><p class="fine-print"><em><span>Arielle Frenette receives funding from SSHRC. </span></em></p><p class="fine-print"><em><span>Crystal Gail Fraser receives funding from SSHRC.</span></em></p><p class="fine-print"><em><span>Julia Christensen receives funding from the Social Sciences and Humanities Research Council of Canada, ArcticNet and the Canada Mortgage and Housing Corporation.</span></em></p>
Summer 2021 is too soon for southern-based researchers and travellers to return to northern, Indigenous communities in the wake of COVID-19, for research fieldwork or leisure.
Christina Goldhar, PhD. Candidate, Geography, Memorial University of Newfoundland
Arielle Frenette, PhD candidate, Department of Geography, Université Laval
Crystal Gail Fraser, Assistant Professor, Dept. of History, Classics, & Religion and the Faculty of Native Studies, University of Alberta
Julia Christensen, Canada Research Chair in Northern Governance and Public Policy, Memorial University of Newfoundland
Licensed as Creative Commons – attribution, no derivatives.
tag:theconversation.com,2011:article/148904
2020-10-29T19:07:29Z
2020-10-29T19:07:29Z
First, do no harm: education research should answer to the same standards as medicine
<figure><img src="https://images.theconversation.com/files/365678/original/file-20201027-23-n76gnh.jpg?ixlib=rb-1.1.0&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/teacher-giving-lesson-technology-classroom-441374218">Shutterstock</a></span></figcaption></figure><p>Australia has one of the <a href="https://www.health.gov.au/health-topics/medical-research">highest-quality systems</a> of <a href="https://www.natureindex.com/news-blog/ten-best-countries-life-sciences-research-rankings">medical research</a> in the world. It has helped underpin the high standing of Australia’s health system — it’s <a href="https://www.bloomberg.com/news/articles/2018-09-19/u-s-near-bottom-of-health-index-hong-kong-and-singapore-at-top">ranked</a> as one of the finest in the world. </p>
<p>Strong principles to protect safety and prevent harm underpin medical research. These <a href="https://www.nybooks.com/articles/2015/11/19/medical-research-dangers-human-subjects/">have been developed</a> due to a history of sometimes well intentioned, but ultimately harmful, medical interventions over the course of the 20th century. </p>
<p>Australia’s <a href="https://www.nhmrc.gov.au/about-us/publications/national-statement-ethical-conduct-human-research-2007-updated-2018">National Statement on Ethical Conduct in Human Research</a> is the primary guidance not only for medical research in Australia but for most research involving people, which includes education. But the harm and impact of educational programs — that are, on the surface, deemed important to educational improvements and well-being — face far less scrutiny in the applications process than do those of medical research.</p>
<p>No-one wants our children to be used as research guinea pigs. High standards of ethical oversight are needed to ensure no child is exposed to possible harm. While the medical research ethics model was developed to provide exactly this level of protection, perversely, in education, it may be exposing our children to harm. </p>
<h2>Differences between medical and education research</h2>
<p>There is a critical difference between medicine and education that impacts research. While drug and surgical therapies are administered to individuals, education is a shared activity. Students are taught in classes and schools. </p>
<p>Research ethics <a href="https://www.nhmrc.gov.au/about-us/publications/national-statement-ethical-conduct-human-research-2007-updated-2018">require individual signed consent</a> from parents for their child to participate in any research project. This makes it difficult to study classroom teaching and class- and school-based programs. While few parents oppose educational research, families have busy lives, and notes home from school are easily overlooked or forgotten.</p>
<p>Studies show <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/j.1753-6405.2009.00387.x">the requirement to sign a consent form</a> results in research participation rates of between 30% and 60%. In this case, the educational intervention being studied can be altered to only be delivered to some of the students in the class. This can lead to <a href="https://bera-journals.onlinelibrary.wiley.com/doi/full/10.1002/berj.3137">biased findings</a>. Or the study may not go ahead if only some parents sign the form. It is no wonder many programs used in schools lack an evidence base informed by rigorous educational research.</p>
<p>As one example, most of the more than 200 mental health programs recommended by the <a href="https://beyou.edu.au/resources/programs-directory">Beyond Blue Be You national education initiative</a> have not actually been tested in Australian schools.</p>
<p>A <a href="https://www.pc.gov.au/inquiries/completed/education-evidence/report">Productive Commission report</a> noted the largest gaps in Australia’s education evidence base relate to </p>
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<p>the evaluation of policies, programs and education practices in Australian schools and early childhood education and care services to identify what works best, for whom and in what circumstances.</p>
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<p>While educational research ethics are guided by the National Statement on Ethical Conduct in Human Research, there is another critical difference between health and education. A new medical therapy <a href="https://www.nps.org.au/consumers/how-medicines-are-approved-for-use-in-australia">can only be approved</a> for the Medicare or Pharmaceutical Benefits Scheme if it has been proven to be safe, effective, and more cost effective than existing therapies. There is no such requirement in education. </p>
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Read more:
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<p>Schools and teachers are given wide latitude to adopt untested educational programs and strategies based on their professional judgements. Some programs such as <a href="https://visible-learning.org">Visible Learning</a>, which helps teachers evaluate their own practices, have been <a href="https://bera-journals.onlinelibrary.wiley.com/doi/abs/10.1111/j.1467-8535.2012.01347_7.x">developed to rigorous standards</a>. But the implementation of such programs is less scrutinised, and questions are seldom raised about their potential harms. </p>
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<a href="https://images.theconversation.com/files/365698/original/file-20201027-15-1xbpoly.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/365698/original/file-20201027-15-1xbpoly.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/365698/original/file-20201027-15-1xbpoly.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=407&fit=crop&dpr=1 600w, https://images.theconversation.com/files/365698/original/file-20201027-15-1xbpoly.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=407&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/365698/original/file-20201027-15-1xbpoly.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=407&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/365698/original/file-20201027-15-1xbpoly.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=512&fit=crop&dpr=1 754w, https://images.theconversation.com/files/365698/original/file-20201027-15-1xbpoly.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=512&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/365698/original/file-20201027-15-1xbpoly.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=512&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">A new medical therapy must be proven to be safe, effective, and more cost effective than existing therapies.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/group-scientists-working-laboratory-71245138">Shutterstock</a></span>
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<p>Research into the <a href="https://www.tandfonline.com/doi/abs/10.1080/0969594X.2011.592972">high stakes NAPLAN</a> test shows several negative effects. These include <a href="https://eprints.qut.edu.au/63662/">teachers limiting the scope</a> of what they teach and concentrating only on what will be in the test, and <a href="https://theconversation.com/too-many-adjectives-not-enough-ideas-how-naplan-forces-us-to-teach-bad-writing-133068">encouraging students to write badly</a>, to a formula that will get them higher marks. But despite this, not much has changed in terms of the way the testing is implemented.</p>
<h2>Whose interests are being served?</h2>
<p>The requirement by university ethics committees for individual signed consent for research studies sounds prudent. Yet is it ethical not to evaluate the impacts of programs that are actually being taught in schools? And how can it be ethical to teach a program in schools that has not been rigorously evaluated? </p>
<p>Ethics committees ought to routinely ask questions about whose interests are being served. Rather than a focus on harm minimisation, a <a href="https://www.tandfonline.com/doi/full/10.1080/0725686042000315740">focus on who benefits from the research</a> might be more appropriate. </p>
<p>Children don’t generally die from poor quality teaching. However, high quality education is one of the main drivers of economic opportunity and increased choices throughout life. </p>
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Read more:
<a href="https://theconversation.com/too-many-adjectives-not-enough-ideas-how-naplan-forces-us-to-teach-bad-writing-133068">Too many adjectives, not enough ideas: how NAPLAN forces us to teach bad writing</a>
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<p>Some educational programs are <a href="https://link.springer.com/chapter/10.1007/978-3-319-58689-2_11">evaluated and assessed</a> for the outcomes they produce, as well as the methodologies they use. But a database of evidence of these studies, similar to the <a href="https://www.cochrane.org">Cochrane Collaboration</a> which summarises previous medical studies about one topic, could be used to inform educational policy and decision making. It could also offer conclusive evidence about these programs and interventions.</p>
<p>In the main, educational projects that intend to help schools respond to policy objectives, such as improving national or international test scores, are rarely evaluated for the potential harm that might arise. For example, the <a href="https://www.education.gov.au/year-1-phonics-check">Australian government is investing $10.8</a> million to develop free phonics checks for Year 1 students to improve literacy levels. While there is mention of research that may help children, there is not, as yet, any adequate evidence-base for phonics testing.</p>
<h2>Funding differences</h2>
<p>Educational research in Australia is also underfunded compared with medical research. The Australian government provided $1.2 billion through the <a href="https://www.nhmrc.gov.au/funding/new-grant-program/overview">Medical Research Endowment Fund</a> and the <a href="https://www.finance.gov.au/government/australian-government-investment-funds/medical-research-future-fund">Medical Research Future Fund</a> in 2019 — <a href="https://www.pc.gov.au/research/ongoing/report-on-government-services/2020/health">roughly 1%</a> of the $103 billion Australian governments spend annually on health care. While the $11.2million of education funding provided by the <a href="https://www.arc.gov.au/grants-and-funding/apply-funding/grants-dataset">Australian Research Council</a> in 2019 is only <a href="https://www.pc.gov.au/research/ongoing/report-on-government-services/2020/child-care-education-and-training/school-education">0.02% of the $58 billion</a> Australian governments spend annually on school education. </p>
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Read more:
<a href="https://theconversation.com/gaps-in-education-data-there-are-many-questions-for-which-we-dont-have-accurate-answers-65241">Gaps in education data: there are many questions for which we don't have accurate answers</a>
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<p>Without research to guide what we invest in, we fail to learn from the experiences of the past and lack the information to guide improvements in our schools and education systems. Although researchers do question and contest educational policies, the impact of this research remains in our peripheral vision.</p>
<p>Australia needs to improve the education evidence base by systematically evaluating the effectiveness of policies, programs and practices. It must also evaluate and their implementation strategies within a cycle of learning, feedback and continuous improvement.</p><img src="https://counter.theconversation.com/content/148904/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>David Lawrence receives funding from the National Health and Medical Research Council and the Medical Research Future Fund. </span></em></p><p class="fine-print"><em><span>Tanya Fitzgerald 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>
No-one wants our children to be used as research guinea pigs. High standards of ethical oversight are needed to ensure no child is exposed to possible harm.
David Lawrence, Principal Research Fellow, The University of Western Australia
Tanya Fitzgerald, Professor and Dean, The University of Western Australia
Licensed as Creative Commons – attribution, no derivatives.