Data and Distrust: American Indians in Genetic Research

Sometimes one of the hardest things for scientists like myself to do is to step back and realize that, in addition to engaging in an empirical and systematic way of answering questions about the world, I am part of a community of scientists. This community might not always represent what I believe, and it can be insular. To those of us who immerse ourselves entirely in the sciences, it simply takes a little extra thought to step back and be self-critical or at least self-conscious. When people disagree with a scientific consensus we are more likely to call them names than to try to engage with them. I agree, many anti-vaxers, many flat-earthers, many climate change deniers, are totally beyond where you can reach them. They are 100% ideologue and 0% data. However, there is a significant portion of that population which we can absolutely reach out to, understand their point of view, and present our data in an accessible way. For example, although it is easy to just brazenly declare that all climate change deniers don’t think the earth is warming, we might be surprised to find that many of them agree that the earth is warming, agree that a portion of it is man-made, and simply disagree on what percent of climate change is due to human activities. That’s way closer to scientific consensus than I would have previously believed. It got me to thinking that this useless put-down game of insulting the intelligence of people who disagree with us is another iteration of “If you didn’t vote like me you support racism and hate”, and we all know where that got us in November. Unless we can bridge this gap and understand the underlying distrust of science that comes from many communities, we are destined to struggle not only against our western blots, our mouse experiments, our chemical reactions or microscopy, but we must also struggle against our fellow man. For many of us, the whole reason we entered science was to help other people, to make a difference. That difference begins with understanding. Today I am sharing with you a small microcosm of this complex societal relationship between science, scientists, and the public. American Indians and Alaska Natives (AIAN peoples) are some of the most marginalized and perhaps mistreated groups in American history. Readers will know I’m not one to just willy nilly say anyone who isn’t in gender/sexual orientation/skin color group A is oppressed or in danger, that’s ridiculous, and almost deliberately oversimplified. Still, let’s be real: when it comes to native populations, we done fucked up a few times. 

American Indians and Alaska Natives number 5.4 million in the United States, representing almost 2% of the overall population [1] and growing at a rate which positions them to be an even larger percentage of the population by the next Census in 2020 [2]. In order to better care for this growing demographic, it is important to understand important genetic and medical histories of the population. In order to do this, members of the community must first be enrolled in studies. For many people, contributing their time or samples to genetic research feels like their chance to help out in some small way. Perhaps they feel as though donating to research is their “good deed” for the week, perhaps they know someone with a specific disorder, or else this is a disorder they might be predisposed to and they want to know more about their risk. In their 2011 paper, Michie et al. identify the potential for donated samples to help countless individuals in the future, the not-insignificant emotional rewards of donating time or tissue, and the possibility of learning about something which will affect them directly as major motivations for participating in genetic studies [3]. While all of these motivators likely apply to members of the American Indian community, their history with medical research is complex and often colored by injustices or mistreatment. As a result, native people are often highly suspicious or distrustful of scientific researchers and medical research as a whole. In order to better serve the healthcare needs of American Indian communities and in order for researchers to find a more respectful and collaborative approach to accessing these communities, it is necessary to first understand the numerous cultural and historical barriers, and ethical points which contribute to the issue at hand.

One of the hurdles to involving American Indians in genetic research studies is that two of the aforementioned primary motivators: possibility of research helping you and possibility of research helping others, are tainted by distrust and a perception that there is very little benefit to the donation of genetic information [4]. The concern on behalf of American Indians that interactions between the native population and the general American population (such as genetic research), will be inherently exploitative is not entirely unjustified. In one case which took place between 2003 and 2010, members of a small American Indian tribe, the Havasupai, donated DNA samples to researchers at Arizona State University with the expressed goal of understanding the debilitating rate of diabetes in their population. However, after donating their samples it came to light that their samples had also been used to study a vast array of conditions, including some highly culturally sensitive topics, such as mental illness, consanguinity, and other hereditary traits [5]. This presents the cultural/ethical issue. In explaining that they would use the samples to study a real health issue in the community (a perceived benefit), they failed to also indicate that the samples would be used to study other things which might not be perceived as beneficial to the Havasupai, or might even be perceived as exploitative or negative. On the other end, the geneticist who had performed the studies, Therese Markow, defends her studies saying that the broad consent form and verbal consent indicated the research was going to “study the causes of behavioral/medical disorders”. In her view and perhaps outright, the American Indians had indeed consented to have their blood studied for these purposes.

This case raises the question of where the ethical limit is for how extensively researchers need to assure that their subjects understand what it is they are consenting to. In genetic research, especially research which focuses on sensitive subpopulations, the informed part of informed consent is of vital importance. According to Nanibaa’ Garrison, a member of the Navajo Nation and professor of bioethics at Seattle Children’s Hospital “What really went wrong was a lack of communication and transparency.” [6]. The official settlement which followed this case reinforces this point. Arizona State University agreed to pay out a total of $700,000 divided amongst several affected members of the tribe, which some legal experts say established a precedent that the rights of subjects are violated if they are not fully informed of the uses of their DNA.

The poor relationship of American Indians with genetic research is not just limited to the fallout of unethically conducted science, either. The complicated and sometimes exploitative nature of American Indian relations with the general US population is steeped in a long and bloody history of biological warfare, genocide, westward expansion, and unfair legal treatment [7]. For a people with a long and rich cultural legacy, Indian removal policies, the trail of tears, and smallpox blankets are fresh memories with real modern-day impact. In an interview with Genome, associate professor of Native Studies at the University of Alberta Kim Tallbear says “Native people always serve as the same kind of object…genomic research, building a pipeline, doing resource development like timber, minerals, oil, and natural gas, we are always an object of curiosity and a place to extract resources.” [6]. This continued perception of exploitation by the US contributes to a sense of “othering” which may be at the root of another issue with genomic research in American Indians. It was previously mentioned that the chance for your samples to help others in the future was a major reason for people to participate in genetic studies. If American Indian populations feel as though they are separate, othered, or just don’t have much in common with the US population, then the possibility to help other people in the country starts to look more like the possibility to be used for another group’s gain and not your own. It is clear that Tallbear, along with many other representatives of native people, think of their genetic information in terms of a resource. In the same interview, Tallbear goes on to say “The last biological resource they want is our DNA. We are the resources upon which the US state is built. Nothing has really changed for us, while our cultures and sovereignty are not considered.” In this statement, she underscores an “us and them” mentality and reveals a clear correlation between genetic information and the more tangible natural resources which helped to build the United States. The question, then, is how researchers can underscore the potential benefits of genetic research not only to the “general population” but specifically to American Indians and to their tribe specifically. While it may be necessary to go to greater lengths in order to convince American Indians of the benefit of their genetic donation, ethically, it can be unclear where convincing ends and overselling begins. Part of informed consent and the ethical conduct of genetic research is being realistic about the benefits which might come to the participant or their community. If researchers oversell or make promises about data or information they can’t necessarily deliver on, it will only sew more seeds of distrust. That being said, there is a great deal of room for American Indians to benefit from genetic and overall medical research. Amongst these communities, the death rate is nearly 50% higher than that of white Americans, and epidemiologically they tend to have higher rates of diabetes [8], obesity [9], liver disease [10], and other conditions with potential genetic roots. Perhaps better communication of these issues and the potential for benefit to native populations can help to improve American Indian – research relations. The benefits of research can also be extended past a possibly esoteric or ambiguous benefit of future knowledge gained. Norton and Manson suggest that studies may employ local community members to help run studies, translate or communicate, and meet with tribal representatives to see how best the study results can be implemented or used to help the American Indian community directly [4]. Researchers may also present results to tribal leaders or a representative group following the study, in order to explain the benefits in a clear and understandable way, as well as to increase transparency, which we recall was identified by Garrison as an important point of contention in the Havasupai case.

American Indians are a people whose culture has been historically systematically suppressed through forcing American Indian children into boarding schools [11], appropriation of cultural knowledge [12], and theft of significant cultural artifacts [13]. As a result, releasing their genetic data, a biochemical stand in for their cultural and ethnic history, may represent a much more significant sacrifice than it does to other study participants. It is already evident that some American Indians consider their DNA and the information encoded within to be a biological resource. For insular communities like many American Indian tribes, genetic information isn’t just their story but also, in part, the story of their tribe. In a 2002 paper, Sharp and Foster argue that, in the case of genetic studies, the results not only affect the consenting participant, but everyone in that community who likely share similar genetic predispositions [14]. They highlight the higher frequency of specific mutations in the now-infamous “breast cancer genes” BRCA1 and BRCA2 in Ashkenazi Jews [15] as having implications for insurance and broader societal impressions. If it is known that Ashkenazi Jews have significantly higher rates of breast cancer, can Ashkenazi women be asked to pay higher insurance premiums? What about the broader stigma associated if a study should find that many American Indians are predisposed to alcoholism [16]? Clearly, this particular issue is not unique to American Indians, but fear of what might be discovered in genetic histories is a common concern. For example, what if a study discovers that you are going to develop Huntington’s, a fatal condition with no known cure when you are 40? What if you had passed it to your children? For American Indians, the concern of stigmatization is accompanied by a secondary threat, something which researchers from outside the community might not think is very important or unethical. In the case of the Havasupai tribe, in addition to the use of blood for studies of genetic disorders, one of the big concerns was that genetic research into the tribe’s geographical origins may contradict their traditional stories of how their tribe came to be, or from whom they descended [5]. Research into the peopling of the Americas thousands of years ago can often be at odds with tribal stories and lineages, and current genetic research may reveal information about family histories which individuals or tribes may not wish to know. In a recent letter to Nature, Reich et al. perform extensive genetic studies on 52 American Indian tribes, revealing potentially sensitive information about migration patterns. Their data reveal significant admixing between three waves of migration from Asia through the Bering Strait (Beringia) [17]. These data and information like it may threaten the identities and cultural beliefs of American Indians. Herein lies another potential ethical conundrum for researchers. In this case, a few volunteers from a large number of tribes have agreed to something which in the end affects aspects of a much larger community of American Indians and Alaska Natives. Some experts suggest that de-identifying the tribes which are used in research studies may be a workable solution [18]. However, the identity of the tribes, their geographic locations, and previous genetic studies on a given group may be important to the study at hand, especially one of a genetic nature. Furthermore, even attempts to de-identify tribes may not be successful. Many American Indian tribes number under 1000 members, with the notable exclusions of the Navajo and Cherokee, and are confined to very specific geographical regions. These two facts alone may make it difficult to anonymize study data. This is a potential issue which researchers must be cognizant of when working with American Indian populations.

American Indians and Alaska Natives suffer from elevated rates of many health conditions with genetic underpinnings such as obesity, diabetes, and liver disease. Simultaneously, there exists a long history of exploitation and abuse of native peoples, reflected in distrust and suspicion of genetic research by these populations. Several cultural and ethical barriers such as low perceived benefits of genetic studies, othering from the greater US population, and worries about genetic challenges to traditional stories and identities exist, separating researchers from valuable data, and native populations from the benefits of genetic research. In order to bridge this gap, proper communication, transparency, and a more sensitive cultural understanding on the part of the researchers are necessary such that genetic studies may ethically incorporate this and other vulnerable populations.

 

References

  1. Norris, T., P. Vines, and E. Hoeffel, The American Indian and Alaska Native Population: 2010. 2010 Census Briefs, 2012.
  2. Colby, S. and J. Ortman, Projections of the Size and Composition of the U.S. Population: 2014 to 2060. Current Population Reports, 2015.
  3. Michie, M., et al., “If I could in a small way help”: motivations for and beliefs about sample donation for genetic research. J Empir Res Hum Res Ethics, 2011. 6(2): p. 57-70.
  4. Norton, I.M. and S.M. Manson, Research in American Indian and Alaska Native communities: navigating the cultural universe of values and process. J Consult Clin Psychol, 1996. 64(5): p. 856-60.
  5. Harmon, A., Indian Tribe Wins Fight to Limit Research of Its DNA, in The New York Times. 2010: New York.
  6. Salamon, M., Turning the Tide: A legacy of abuse has caused many American Indians to distrust genomic studies, leading scientists to forge a new, more collaborative path forward. Genome, 2017. 4(1): p. 30-34.
  7. Henderson, D.A., et al., Smallpox as a biological weapon: medical and public health management. Working Group on Civilian Biodefense. JAMA, 1999. 281(22): p. 2127-37.
  8. Cho, P., et al., Diabetes-related mortality among American Indians and Alaska Natives, 1990-2009. Am J Public Health, 2014. 104 Suppl 3: p. S496-503.
  9. Schell, L.M. and M.V. Gallo, Overweight and obesity among North American Indian infants, children, and youth. Am J Hum Biol, 2012. 24(3): p. 302-13.
  10. Suryaprasad, A., et al., Mortality caused by chronic liver disease among American Indians and Alaska Natives in the United States, 1999-2009. Am J Public Health, 2014. 104 Suppl 3: p. S350-8.
  11. Archuleta, M., B. Child, and K. Lomawaima, Away from Home: The Indian Boarding School Experience, T.H. Museum, Editor. 2000: Phoenix, AZ.
  12. Brush, S. and D. Stabinsky, Valuing Local Knowledge: Indigenous Peoples and Intellectual Property Rights. 1996, Washington, D.C.: Island Press.
  13. Thomas, D.H., Skull Wars: Kennewick Man, Archaeology, and the Battle for Native American Identity. 2000, New York: Basic Books.
  14. Sharp, R.R. and M.W. Foster, Community involvement in the ethical review of genetic research: lessons from American Indian and Alaska Native populations. Environ Health Perspect, 2002. 110 Suppl 2: p. 145-8.
  15. Struewing, J.P., et al., The risk of cancer associated with specific mutations of BRCA1 and BRCA2 among Ashkenazi Jews. N Engl J Med, 1997. 336(20): p. 1401-8.
  16. Long, J.C., et al., Evidence for genetic linkage to alcohol dependence on chromosomes 4 and 11 from an autosome-wide scan in an American Indian population. Am J Med Genet, 1998. 81(3): p. 216-21.
  17. Reich, D., et al., Reconstructing Native American population history. Nature, 2012. 488(7411): p. 370-4.
  18. Bowekaty, M.B. and D.S. Davis, Cultural issues in genetic research with American Indian and Alaskan Native people. IRB, 2003. 25(4): p. 12-5.

 

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