{"id":95931,"date":"2021-04-14T15:18:56","date_gmt":"2021-04-14T20:18:56","guid":{"rendered":"https:\/\/news.medill.northwestern.edu\/chicago\/?p=95931"},"modified":"2021-04-14T15:18:56","modified_gmt":"2021-04-14T20:18:56","slug":"indigenous-researchers-call-for-ethical-genomics-projects","status":"publish","type":"post","link":"https:\/\/news.medill.northwestern.edu\/chicago\/indigenous-researchers-call-for-ethical-genomics-projects\/","title":{"rendered":"Indigenous researchers call for ethical genomics projects"},"content":{"rendered":"

Navajo geneticist Krystal Tsosie thought she would target her career toward cancer biology. She studied nano- and microparticle research but soon faced a dilemma in her research trajectory.<\/p>\n

\u201cThere are very few Native Americans in STEM fields and in research in general,\u201d said Tsosie, a bioethicist with the Native BioData Consortium<\/a>. \u201cI felt like if I were to stay in cancer biology, that if one of my inventions or innovations were ever going to go from bench-to-bedside, chances are, unfortunately, that those innovations probably wouldn’t trickle down to members of my own community within my lifetime.\u201d<\/p>\n

So she decided to pursue a master\u2019s degree in bioethics, where she learned why many Native Americans are hesitant to participate in genomics research projects. She noticed there were several genetic controversies involving data collection that affected Indigenous communities in the last decade.<\/p>\n

Indigenous researchers are calling for a more ethical use of Indigenous data gathered in large-scale projects. They believe the data is being used to overpromise benefits that never reach the community.<\/p>\n

\u201cAmerican Indigenous peoples have been unfortunately exploited in terms in genetics research,\u201d Tsosie said. \u201cThis is not something that occurred X number of decades ago. This type of exploitation continues to exist.\u201d<\/p>\n

Researchers conduct large-scale genomics projects under the promise of unlocking medical mysteries and helping people find better health care. But the reality is that most Indigenous communities never see the benefits of their data.<\/p>\n

Why genetics?<\/h2>\n

Many companies and commercials promise that a DNA test can help determine your cultural identity via genetic ancestry and your inherent health risks. Geneticists say this is a dangerous correlation.<\/p>\n

\u201cWe draw effectively arbitrary lines in how we group \u2026 and how we characterize populations using genetics,\u201d Tsosie said. \u201cWe (should not) biologically link cultures and different heritages and ancestries with genetics, because there’s a lot of unfortunate inferences and suppositions that could be made.\u201d<\/p>\n

Joseph Yracheta, senior research scientist at the Native BioData Consortium, said this is part of the so-called overpromise of genomics.<\/p>\n

\u201c(Researchers) thought they were going to find all of these solutions, and it turns out associations with health disparity were not that strong,\u201d he said. \u201cIt\u2019s diet, it\u2019s behavior, it\u2019s socioeconomic status.\u201d<\/p>\n

However, there are still gaps in our current understanding of genomics. Most of the genomic data that researchers know today is based on white bodies.<\/p>\n

\u201cWhen we do predictions of how potentially pathogenic a mutation might be, they\u2019re not very effective for historically marginalized communities, because the vast majority of individuals that have been sequenced are of western European ancestry,\u201d said Dr. Keolu Fox, professor of genetics at the University of California, San Diego.<\/p>\n

Fox said it\u2019s important to include Indigenous communities in the conversation around preventive medicine, but this needs to be done ethically. Native communities have been historically exploited by research teams, so they need to be included in the conversation.<\/p>\n

The National Institutes of Health<\/a> participates in genetics and genomic projects with Native communities and hopes to continue these conversations. Dr. Lawrence Brody said this is the main mission of the NIH.<\/p>\n

\u201cWe have a mission to improve health, and \u2026 improve the health of all people,\u201d he said. \u201cSo we want to make sure that tribal communities participate in the benefits of health, which, at times, may mean participating in research, recognizing that they really are autonomous and that the research question needs to be driven by the communities.\u201d<\/p>\n

Commodification of data<\/h2>\n

According to Fox, data is the number one commodity in the world. There\u2019s a large market to collect all kinds of data, including genetics. Even the new COVID-19 vaccines, which use mRNA, rely on this genetic carrier to create inert coronavirus proteins that activate antibodies to fight off the illness.<\/p>\n

But this is where the danger can lie for Indigenous communities. Companies \u2014 with customers typically granting permission through just a click of a user agreement rather than an in-depth read \u2014 can sell and resell their data for a profit. Individuals and groups such as Native communities rarely reap the benefits.<\/p>\n

Jacquie Haggarty, vice president, deputy general counsel and privacy officer of the popular 23-and-Me<\/a> genetics site, provided a statement for this story. She said customers can choose to have their data sample \u2014 the sample of saliva \u2014 discarded after testing, or data samples can be kept up to 10 years. Customers can also choose to have their sample discarded through their account settings.<\/p>\n

Another issue comes from the idea of tribal sovereignty in the United States. Yracheta said there are disparities in the interests of tribes and the federal government.<\/p>\n

\u201c(Researchers) also believe that the tribal resources, whether their DNA or any other kind of data, belongs to who pays for it,\u201d he said. \u201cSince it’s paid for by public tax dollars, then it should belong to every United States citizen and be shared freely, but the tribes don’t feel that way.\u201d<\/p>\n

Yracheta said there is a lack of policy in the United States to determine how the data is used, and that is why this research has not been conducted ethically.<\/p>\n

Acknowledging group risk<\/h2>\n

Most scientific research uses the concept of informed consent. According to the NIH, informed consent<\/a> is defined as \u201cthe process by which a volunteer confirms his or her willingness to participate in the research after having been informed of all aspects of the trial.\u201d<\/p>\n

In most cases of genomics research, consent is given on an individual level. However, Indigenous communities have said this violates tribal sovereignty and ignores the group risk involved with large-scale genomics projects.<\/p>\n

\u201cGroup consensus is how we have governed ourselves for millennia, so it’s more culturally consistent for us to operate in a communitarian ethic than it is an individual ethic,\u201d Tsosie said. \u201cWe have to acknowledge that this individual informed consent process is a very Western notion that is \u2026 acultural to our own and probably different in terms of cultural norms to other worldwide cultures.\u201d<\/p>\n

At the NIH, Dr. Sara Hull explained there are several committees and review boards who are responsible for ensuring that research by any of the institutes is being done ethically for the benefit of tribes.<\/p>\n

\u201cI am working on developing training programs and building our own capacity to recognize what some of the important ethical issues are and that are different from the research we do in our own research hospital when we’re going out and working with tribes,\u201d she said. \u201cAnd a big part of that is making sure first before we even look at a study, making sure that the researcher has appropriately engaged with the community (and) has gotten tribal approval.\u201d<\/p>\n

Hull added that access to data is determined on a study-by-study basis. There are different levels of data access, from complete open access to a small number of investigators. She said that although NIH policies generally encourage broad data-sharing, a data plan needs to be developed for every study.<\/p>\n

There is a concern among Native communities that various biomarkers of individuals can be used against them in group settings. Some fear their sovereignty may be threatened if genetic information suggests they are \u201cnot Native enough\u201d in the eyes of the government.<\/p>\n

Tsosie advocates for community-based participatory research. Members of Native communities know best about their lifestyle and can more easily determine what risks will be good or bad for the collective group. By developing their own research infrastructure and running their own projects, they can ensure the data is being used ethically.<\/p>\n

Keeping data close<\/h2>\n

Through the Native BioData Consortium, Indigenous researchers hope to keep their data on tribal lands so they have complete ownership of their information.<\/p>\n

\u201cPossession is nine-tenths of the law,\u201d Yracheta said. \u201cIf the samples and the data are on the reservation, that is a geographic and legal boundary, so \u2026 outside researchers have to negotiate.\u201d<\/p>\n

With small-scale genomics projects, Indigenous communities do not have to share their genetic data with outside companies or researchers. They can choose how and when to share the data that best benefits their interests and meets community needs.<\/p>\n

Approaches such as this put the community first and keep members involved in the scientific process rather than leaving them in the dark.<\/p>\n

Yracheta said it is important to keep the data and its interpretation local.<\/p>\n

\u201cData doesn\u2019t exist in a vacuum,\u201d he said. \u201cYou need somebody there (locally) to interpret and translate the research. And a lot of that interpretation, if it comes from non-Indigenous eyes, is going to be wrong.\u201d<\/p>\n

However, not all Indigenous people in the United States live on tribal land. In fact, the vast majority of them live in urban areas and can still be exploited by large research groups. Indigenous researchers recommend that there be a statement on intake forms that acknowledge the group risk inherently involved with underrepresented groups.<\/p>\n

Brody and Hull said they are encouraging more training programs for Indigenous researchers to participate. There has been a shift in the research community in terms of how they view subjects.<\/p>\n

\u201cIn science we’ve moved from thinking about subjects, which is a quite \u2026 pejorative way to think of who you’re working with, to participants and partners,\u201d Brody said. \u201cIt’s taken a generation to do it, (but) it (is) actually valuable and respectful in the approach to research.\u201d<\/p>\n

Communication is key when it comes to ethical research, especially when dealing with something as personal as genetics. And Indigenous people have long been the target when they should be included in the conversation. Fox said this education goes both ways.<\/p>\n

\u201cBut I think that non-Indigenous people have a lot to learn from us about sustainability, cultural sustainability, respect, love, honor (and) courage,\u201d he said.<\/p>\n

Emily Little is a health, environment, and science reporter at Medill. You can follow her on Twitter at <\/i>@EmilyM_Little.<\/i><\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Navajo geneticist Krystal Tsosie thought she would target her career toward cancer biology. She studied nano- and microparticle research but soon faced a dilemma in her research trajectory. \u201cThere are very few Native Americans in STEM fields and in research in general,\u201d said Tsosie, a bioethicist with the Native BioData Consortium. \u201cI felt like if […]<\/p>\n","protected":false},"author":702,"featured_media":95936,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[29,675,5092,4630],"tags":[],"class_list":["post-95931","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-health-and-science","category-social-justice","category-spring-2021","category-technology"],"yoast_head":"\nIndigenous researchers call for ethical genomics projects - Medill Reports Chicago<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/news.medill.northwestern.edu\/chicago\/indigenous-researchers-call-for-ethical-genomics-projects\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Indigenous researchers call for ethical genomics projects - Medill Reports Chicago\" \/>\n<meta property=\"og:description\" content=\"Navajo geneticist Krystal Tsosie thought she would target her career toward cancer biology. She studied nano- and microparticle research but soon faced a dilemma in her research trajectory. \u201cThere are very few Native Americans in STEM fields and in research in general,\u201d said Tsosie, a bioethicist with the Native BioData Consortium. \u201cI felt like if […]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/news.medill.northwestern.edu\/chicago\/indigenous-researchers-call-for-ethical-genomics-projects\/\" \/>\n<meta property=\"og:site_name\" content=\"Medill Reports Chicago\" \/>\n<meta property=\"article:published_time\" content=\"2021-04-14T20:18:56+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/s3.amazonaws.com\/medill.wordpress.offload\/wp-media-folder-medill-reports-chicago\/wp-content\/uploads\/sites\/3\/2021\/04\/national-cancer-institute-W6yy0wYV-hk-unsplash.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"2560\" \/>\n\t<meta property=\"og:image:height\" content=\"1707\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Emily Little\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Emily Little\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"8 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/news.medill.northwestern.edu\/chicago\/indigenous-researchers-call-for-ethical-genomics-projects\/\",\"url\":\"https:\/\/news.medill.northwestern.edu\/chicago\/indigenous-researchers-call-for-ethical-genomics-projects\/\",\"name\":\"Indigenous researchers call for ethical genomics projects - Medill Reports Chicago\",\"isPartOf\":{\"@id\":\"https:\/\/news.medill.northwestern.edu\/chicago\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/news.medill.northwestern.edu\/chicago\/indigenous-researchers-call-for-ethical-genomics-projects\/#primaryimage\"},\"image\":{\"@id\":\"https:\/\/news.medill.northwestern.edu\/chicago\/indigenous-researchers-call-for-ethical-genomics-projects\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/s3.amazonaws.com\/medill.wordpress.offload\/wp-media-folder-medill-reports-chicago\/wp-content\/uploads\/sites\/3\/2021\/04\/national-cancer-institute-W6yy0wYV-hk-unsplash.jpg\",\"datePublished\":\"2021-04-14T20:18:56+00:00\",\"author\":{\"@id\":\"https:\/\/news.medill.northwestern.edu\/chicago\/#\/schema\/person\/9a0a96eb28cf97aa595cf04213a9cc9c\"},\"breadcrumb\":{\"@id\":\"https:\/\/news.medill.northwestern.edu\/chicago\/indigenous-researchers-call-for-ethical-genomics-projects\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/news.medill.northwestern.edu\/chicago\/indigenous-researchers-call-for-ethical-genomics-projects\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\/\/news.medill.northwestern.edu\/chicago\/indigenous-researchers-call-for-ethical-genomics-projects\/#primaryimage\",\"url\":\"https:\/\/s3.amazonaws.com\/medill.wordpress.offload\/wp-media-folder-medill-reports-chicago\/wp-content\/uploads\/sites\/3\/2021\/04\/national-cancer-institute-W6yy0wYV-hk-unsplash.jpg\",\"contentUrl\":\"https:\/\/s3.amazonaws.com\/medill.wordpress.offload\/wp-media-folder-medill-reports-chicago\/wp-content\/uploads\/sites\/3\/2021\/04\/national-cancer-institute-W6yy0wYV-hk-unsplash.jpg\",\"width\":2560,\"height\":1707,\"caption\":\"Indigenous communities rarely see the benefits of large-scale genomics projects. 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