{"id":12338,"date":"2022-04-20T12:52:28","date_gmt":"2022-04-20T10:52:28","guid":{"rendered":"https:\/\/h3africa.org\/?p=12338"},"modified":"2022-05-09T11:53:23","modified_gmt":"2022-05-09T09:53:23","slug":"how-a-south-african-communitys-request-for-its-genetic-data-raises-questions-about-ethical-and-equitable-research","status":"publish","type":"post","link":"https:\/\/h3africa.org\/index.php\/2022\/04\/20\/how-a-south-african-communitys-request-for-its-genetic-data-raises-questions-about-ethical-and-equitable-research\/","title":{"rendered":"How a South African community\u2019s request for its genetic data raises questions about ethical and equitable\u00a0research"},"content":{"rendered":"<p>[vc_row][vc_column][vc_column_text css=&#8221;.vc_custom_1650452006362{margin-top: 36px !important;}&#8221;]<\/p>\n<div>\n<div class=\"content-header-block\">\n<h3 class=\"legacy entry-title instapaper_title\">How a South African community\u2019s request for its genetic data raises questions about ethical and equitable&nbsp;research<\/h3>\n<\/div>\n<\/div>\n<p>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text]Scientists believe Africa is where\u00a0<a style=\"text-decoration: none;\" 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\u00a0<a style=\"text-decoration: none;\" href=\"https:\/\/scholar.google.com\/citations?user=sDUNh9UAAAAJ&amp;hl=en\">genetic<\/a>\u00a0<a style=\"text-decoration: none;\" href=\"http:\/\/hennlab.ucdavis.edu\/dana-al-hindi.html\">researchers<\/a>\u00a0from the\u00a0<a style=\"text-decoration: none;\" href=\"http:\/\/hennlab.ucdavis.edu\/\">Henn Lab<\/a>\u00a0have worked among the Khoe-San and self-identified \u201c<a style=\"text-decoration: none;\" href=\"https:\/\/www.semanticscholar.org\/paper\/What%27s-in-a-name-Racial-categorisations-under-and-Posel\/81e1ad38d1f37b37fe1cddd8a81081b378242217\">Coloured<\/a>\u201d 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>\n<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\u2019ve grappled with the common question of how to ensure an equitable balance of benefits between researchers and the community they study. What we\u2019ve found is that there is no easy answer.<\/p>\n<h4>The history of the Khoe-San<\/h4>\n<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 \u201c<a style=\"text-decoration: none;\" href=\"https:\/\/doi.org\/10.1016\/S1090-9524(03)00007-X\">Coloured<\/a>\u201d during the early 1900s. Early\u00a0<a style=\"text-decoration: none;\" href=\"https:\/\/muse.jhu.edu\/book\/35209\">European colonizers<\/a>\u00a0initially 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>\n<p><a style=\"text-decoration: none;\" href=\"https:\/\/doi.org\/10.1534\/genetics.116.187369\">We<\/a>\u00a0and\u00a0<a style=\"text-decoration: none;\" href=\"https:\/\/doi.org\/10.1126\/science.1227721\">other<\/a>\u00a0research 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\u00a0<a style=\"text-decoration: none;\" href=\"https:\/\/doi.org\/10.1093\/hmg\/ddaa274\">western Africa<\/a>\u00a0around 1,500 years ago and from\u00a0<a style=\"text-decoration: none;\" href=\"https:\/\/doi.org\/10.1186\/s12915-020-0746-1\">Europe<\/a>\u00a0a little under 400 years ago.\u00a0<a style=\"text-decoration: none;\" href=\"https:\/\/doi.org\/10.1186\/s12915-020-0746-1\">Asian ancestry<\/a>\u00a0is also present as a result of the aforementioned slave trade.<\/p>\n<p>The Khoe and San are considered the most\u00a0<a style=\"text-decoration: none;\" href=\"https:\/\/doi.org\/10.1073\/pnas.1017511108\">genetically diverse<\/a>\u00a0human 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\u00a0<a style=\"text-decoration: none;\" href=\"https:\/\/doi.org\/10.1038\/464487a\">Khoe-San<\/a>, using a hyphen to acknowledge their cultural distinction.<\/p>\n<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\u2019s racist legacy.<\/p>\n<h4>Logistical challenges and potential risks<\/h4>\n<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>\n<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\u00a0<a style=\"text-decoration: none;\" 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\u2019 academic institution, as well as restrictions set by the\u00a0<a style=\"text-decoration: none;\" href=\"http:\/\/trust-project.eu\/wp-content\/uploads\/2017\/03\/San-Code-of-RESEARCH-Ethics-Booklet-final.pdf\">South African San Council<\/a>.<\/p>\n<p>There are also\u00a0<a style=\"text-decoration: none;\" href=\"https:\/\/www.ncbi.nlm.nih.gov\/books\/NBK525077\/\">potential risks<\/a>\u00a0to 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>\n<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>\n<p>&nbsp;[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_btn title=&#8221;Read Full Story&#8221; style=&#8221;outline&#8221; color=&#8221;juicy-pink&#8221; align=&#8221;center&#8221; button_block=&#8221;true&#8221; link=&#8221;url:https%3A%2F%2Ftheconversation.com%2Fhow-a-south-african-communitys-request-for-its-genetic-data-raises-questions-about-ethical-and-equitable-research-166940||target:%20_blank|&#8221;][\/vc_column][\/vc_row]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>[vc_row][vc_column][vc_column_text css=&#8221;.vc_custom_1650452006362{margin-top: 36px !important;}&#8221;] How a South African community\u2019s request<span class=\"excerpt-hellip\"> [\u2026]<\/span><\/p>\n","protected":false},"author":2,"featured_media":4294,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_coblocks_attr":"","_coblocks_dimensions":"","_coblocks_responsive_height":"","_coblocks_accordion_ie_support":"","footnotes":""},"categories":[28,1],"tags":[],"class_list":["post-12338","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/h3africa.org\/index.php\/wp-json\/wp\/v2\/posts\/12338","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/h3africa.org\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/h3africa.org\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/h3africa.org\/index.php\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/h3africa.org\/index.php\/wp-json\/wp\/v2\/comments?post=12338"}],"version-history":[{"count":4,"href":"https:\/\/h3africa.org\/index.php\/wp-json\/wp\/v2\/posts\/12338\/revisions"}],"predecessor-version":[{"id":12386,"href":"https:\/\/h3africa.org\/index.php\/wp-json\/wp\/v2\/posts\/12338\/revisions\/12386"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/h3africa.org\/index.php\/wp-json\/wp\/v2\/media\/4294"}],"wp:attachment":[{"href":"https:\/\/h3africa.org\/index.php\/wp-json\/wp\/v2\/media?parent=12338"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/h3africa.org\/index.php\/wp-json\/wp\/v2\/categories?post=12338"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/h3africa.org\/index.php\/wp-json\/wp\/v2\/tags?post=12338"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}