Krystal Tsosie, Diné; Keolu Fox, Native Hawaiian; and Joe Yracheta, Purhetecha and Tarahumara, talked about their work at the 2015 annual meeting of the American Society of Human Genetics in Maryland on October 10. Their session, titled “Research Partners, Not Subjects: Engaging Indigenous Peoples in Genetics,” was a first for the organization.
Native Americans Not Anti-Science
Tsosie says one of the important points she wants non-Natives to understand is “Native Americans are not anti-science. We are just anti- the way science has been done to us in the past… We as Natives have been scientists all along. [For example], corn in its original form was a small cob that is totally different from our corn kernels today. Today, they’re huge; they have a lot of sugar in them. We as Native Americans early on acted as scientists” to domesticate maize.
But “we don’t like the way that Western biomedical scientists have treated us as subjects instead of equal partners in research.”
Impacts of Havasupai Research
One of the most egregious violations of Native genetic rights occurred when scientists from Arizona State University used DNA samples they had collected from the Havasupai people in 1989 to test theories about Type II diabetes to investigate, without the tribe’s explicit consent, mental illness, migration and inbreeding. The scientists’ conclusions, which they published in 2004, contradicted Havasupai origin beliefs. The tribe sued and eventually settled with the university for $700,000.
“[The publication of the migration studies] resulted in a huge uproar in the community,” says Tsosie. “Then other tribes began saying that they didn’t want to participate in this kind of research because they knew it could be culturally harmful.” Tsosie says the only recent genome-wide association study she can think that includes Native American tribes is a paper published in 2009.
Genetics and Sovereignty
Cultural harm is only one possible outcome of the misuse of genetic studies for Native peoples. “Native American nations don’t know how genetic research is going to impact them, and because a lot of our political rights are tied to our genetic rights, it’s a fearful notion that our sovereignty might be infringed upon by what researchers might find that could be used against us.”
An example, she says, is blood quantum. But “what people don’t understand is that we as tribal nations have the sovereign power to dictate our own blood quantum. We don’t even necessarily have to use genetics as a means of [determining] that blood quantum. We can use our family histories. We still have the power to decide who we see as Indian or not; we just have to make sure that those rights are protected and that way we don’t have our political power usurped from us.”
For the People, By the People
Fox sees a solution. “We should be educating our own communities and performing the science—for the people, by the people. That creates transparency within our community because we’re saying if Native people are involved in every step, it will reduce some of that distrust in research and specifically in genetic research where institutions have used genetic information to challenge origin stories and tell us how our communities are interbreeding.”
Yracheta says he is concerned with analyzing the question of “whether genetic information is the same as other kinds of clinical information. There are a lot of articles that say genetic information is the same in terms of privacy concerns.
“I am arguing that for American Indian communities that’s not true, that genetic data is different from those other kinds of data, so tribes need to be in control of that data to preserve privacy, for intellectual property reasons and because of spiritual and cultural concerns.
Future of Medicine
Tsosie points out, “Native Americans suffer the worst health outcomes of any ethnic minority group in the world, especially in the U.S. That’s not going to change unless researchers have an open dialog with tribes and vice versa on how to actually conduct that research appropriately in a way that is culturally relevant to us.”
Fox notes that there are “very few indigenous PhDs in the genomics field; that is a disparity in itself,” one that puts indigenous people in a very precarious situation.
“Genomics is the future of medicine. The White House has allocated $215 million for precision medicine. We need to make sure Indigenous Peoples are included in that future. If not, we’re going to be moving into an era of medicine that is predictive and preventative and that gap in health disparities is going to continue to widen.”
Being included, however, may mean giving up more than tribes are prepared to concede, says Yracheta. The National Institutes of Health, for example, will not fund any research unless subjects agree that their data will be available to anyone who wants it, exactly what the tribes do not want to happen. So far NIH has not conducted the legally-required tribal consultations that might allow tribes to take part in their studies, says Yracheta. “In the future, tribes either won’t get to partake of this kind of research and what it might mean for generating revenue and improving their health care, or they will end up in the situation that you need to do this or you will get nothing. So they’ll do it even though their rights aren’t protected and once they’ve given that information there’s no way to get it back.”
He continues, “A lot of rights have been taken away from Canadian First Nations, and the rights of Latin American indigenous people are not protected at all. That’s why I’m so interested in making sure American Indians take this issue on. They’re the only ones in the Americas that have these kinds of rights and they could set a precedent that hopefully tribes in other places could point to—they got these protections, so why can’t we?”
But this has to happen soon. “A lot of the information [geneticists are] getting out of the Amazon could pertain to American Indian tribes, so they might say we don’t need you because we already have the information.” [The New York Times has explored this issue in the article, “In the Amazon, Giving Blood and Getting Nothing.”
Which is one reason this groundbreaking session at the ASHG meeting was so important.