Ethics

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.

By Maureen Salamon
Photograph by Trevor Paulhus

Guthrie Ducheneaux, a member of the Cheyenne River Sioux tribe in South Dakota, at the cattle ranch where he was born and raised.

For Guthrie Ducheneaux, any skepticism about the need for American Indians to embrace research and share resulting data died along with his sister.

Nine years ago, on the Cheyenne River Sioux reservation in South Dakota where Ducheneaux lives with his extended family and 18,000 other tribe members, the all-terrain vehicle his sister was riding rolled over, crushing her underneath. The young woman’s life might have been saved if the ambulance dispatched to the prairie where she lay injured hadn’t come upon a washed-out road, necessitating a time-consuming detour.

“The organization responsible for the roads knew the road was washed out, but they didn’t have the data mechanism to share with police, fire, and ambulance services,” says Ducheneaux, 44, who still lives on the cattle ranch where he was born, on the 4,000-square-mile reservation. “It may not have made a difference in saving her, but it could have.”

Ducheneaux’s profound loss drove him to become a huge proponent of research involving American Indians. The information technology professional and civic volunteer now tirelessly educates and steers his community toward participating in studies examining clinical, psychosocial, and other factors affecting their health and well-being, including genomics.

“Before that, it was just a theory — it was never a meaningful thing that we need data to make decisions,” he says. “But the emergent need for us to be sharing information with each other is an amorphous thing that you don’t realize until it slaps you in the face. I would just as soon people didn’t have to be slapped to understand it.”


History of Injustice

Ducheneaux and other genetic research advocates face an uphill climb stemming from a long legacy of injustice toward American Indian and Alaska Native people, who total 5.4 million U.S. residents, or about 1.7 percent of the total population. Centuries of cultural, social, and environmental abuses of Native peoples by the U.S. government include being stripped of their land, resettled in unfamiliar regions, and banned from using their languages and practicing their religious traditions. Other cruelties included separating American Indian children from their tribes by sending them to boarding schools and placing some in non-Indian homes for adoption.

More recently, DNA from American Indians was used for research to which they didn’t consent, including studies on schizophrenia, migration patterns, and inbreeding. Combined with a history of unethical genetic research on indigenous populations that experts say has continued for decades, the net result is perhaps predictable: Many American Indians are extremely wary of genetic researchers and their motivations.

Photograph by Trevor Paulhus

“Native people always serve as the same kind of object — whether it’s genomic research, building a pipeline, doing resource development such as timber, minerals, oil, gas — we are always an object of curiosity and a place [from which] to extract resources,” says Kim TallBear, an associate professor of Native Studies at the University of Alberta in Edmonton, Canada, and a member of the Sisseton-Wahpeton Oyate, which descends from the Cheyenne and Arapaho tribes of Oklahoma.

“The last biological resource they want is our DNA,” TallBear adds. “We are the resources upon which the U.S. state is built. Nothing has really changed for us, while our cultures and sovereignty are not considered.”


Toxic Mix

American Indians’ reluctance to participate in genetic research is especially problematic since they have some of the worst health outcomes — for reasons both genetic and otherwise — of any racial or ethnic group. They have some of the steepest rates of obesity, diabetes, and premature death in the U.S.

Native groups haven’t benefited from overall drops in mortality experienced by the wider U.S. population. Their rates of tobacco-related illnesses are considered particularly worrisome, and their leading causes of death are “distinctly different” from those of non-Hispanic white people, “with diabetes, injuries, and chronic liver disease taking a particularly devastating toll,” according to a 2014 special issue of the American Journal of Public Health focusing on American Indian and Alaska Native people. Notably, between 1999 and 2009, the all-cause death rate for American Indians was nearly 50 percent higher than for Americans of European descent.

One contributing factor is insufficient healthcare funding for Native Americans, leading to fewer routine health screenings and lower rates of disease treatment, says Paul Spicer, a professor of anthropology at the University of Oklahoma. About 20 percent of American Indians and Alaska Natives lack health insurance, compared to about 9 percent of the nation as a whole, according to U.S. Census data.

“In terms of the federal commitment to Indian healthcare, it’s not nearly what it should be,” says Spicer, whose research focuses on the ethics and politics of knowledge and practice in American Indian and Alaska Native communities. “Coupled with severe disruptions in aboriginal ways of life … it’s a toxic mix.”


Breach of Trust

A landmark legal case enlarging and spotlighting the divide between American Indians and researchers pitted the 650-member Havasupai tribe against Arizona State University (ASU). Researchers from ASU took DNA samples from approximately 400 tribal members between 1990 and 1994 under the guise of studying the tribe’s 50 percent-plus diabetes rate among adults.

It was later revealed that the Grand Canyon tribe’s genetic samples were also used for research relating to schizophrenia, consanguinity (inbreeding), and the tribe’s migration patterns and origins in Asia — all considered taboo topics in Havasupai culture. In a 2010 settlement, the Havasupai were awarded $700,000 and the return of their genetic samples.

“What really went wrong was a lack of communication and transparency,” says Nanibaa’ Garrison, a member of the Navajo Nation and an assistant professor in the Division of Bioethics at Seattle Children’s Hospital in Washington. Garrison conducts research on the use of genetic research in American Indian communities. “The tribe believed one type of research was happening, but in reality, a completely different type of research was being conducted. It was a breach of trust.”

The mandatory return of their genetic samples was especially pivotal for Havasupai tribe members since many American Indians, though not all, consider DNA and other biological matter to be sacred. The definition of “sacred,” too, can be open for interpretation.

“The things we can’t see, that Westerners might call superstition, I think is shorthand for something much more complicated in our own languages,” TallBear says. “I think it’s false to say indigenous people are anti-science. These words are invoked as a way to say, ‘Back off, you don’t have agency to push your worldview down our throats.’ ”


Mixed Fallout

In many ways, the Havasupai case drew a line in the sand, becoming a “before” and “after” for American Indians who became increasingly distrustful of medical researchers. The case deterred them from participating in further research. But since it was settled out of court, no legal precedent was set for researchers to follow in subsequent, similar situations. Nevertheless, experts point to a growing awareness of the need to tighten informed consent procedures governing DNA research and to provide special consideration for vulnerable populations. Garrison, however, was disappointed by some of the responses of researchers she interviewed in her own review of the Havasupai case.

“They didn’t feel they had to dwell on it too much, where it would have been a nice opportunity to see critically where things could go wrong and address them before there were bigger problems,” she says.

The case also served, to a degree, to drive away new genetic research in indigenous communities, experts say. Deterred by the time commitment and level of documentation required to satisfy all parties — and worried about making mistakes — some scientists simply seek data elsewhere.

“Some have undoubtedly decided it’s not worth their trouble and moved on to other communities or to engaging Native communities in other ways,” Spicer says, adding that tribes have changed their approach, too. “Many tribes now have explicit regulations that don’t just approve research in advance but also require investigators to work with the tribes on the ways in which it’s disseminated.”


A New Dialogue

Building trust between American Indians and scientists will require years of research projects in which indigenous people feel they are active participants who are heard, respected, and understood. And those plodding efforts need to be intentional from the start.

“[By] having conversations upfront, before anyone has a research project idea in mind, [there] should be some way to lay the groundwork to establish a relationship,” Garrison suggests. “Constant communication and transparency are two very big factors that absolutely need to be in place. And not just consultation — that tends to be one-directional — but bidirectional openness is needed so both parties understand what’s going on and voice what they feel is important.”

Joseph Yracheta, a pharmacogenomics researcher with Missouri Breaks Industry Research, Inc., a South Dakota company conducting clinical research with indigenous populations, notes that many researchers hail from universities and don’t understand the sovereignty of American Indians. This hinders these academics’ progress, he says.

“They still consider American Indians a minority in this country, [as if] they still have to fight for a piece of the pie,” says Yracheta, himself a descendant of the P’urhe’pécha and the Tarahumara of Mexico. “But American Indians, by treaty and the Constitution, are supposed to have their own piece of the pie — they’re a sovereign nation. If academics recognize that, they can be better advocates.”

Experts agree that more American Indians should take leadership roles in health research to more effectively influence not only how research is done, but to improve public health outcomes among tribes.

“One of the most important things we can do is to train Native scientists so they’re able to advance this work themselves,” Spicer says. “But this has been a discourse dominated by non-Native folks, and the only reason that’s the case is because we haven’t done a good job of having Native peoples prepared.”

Ducheneaux concurs. “A lot of it, for me, is the difference between having something done to you and something done for you,” he says. “What has always [resulted] in any population where information is hard to get or understand is a common ignorance.”

He adds, “as long as we keep our people educated and do [research] from here as much as possible, or it has to come through us, there aren’t many cons, in my opinion. There may be bad researchers, but research is a tool.”