San Francisco – For Native Americans in need of good research on their persistent health issues, the troubling case of Arizona’s tiny Havasupai Indian tribe “put genetic research on the front burner,” stated Ron Whitener, executive director of the University of Washington’s Native American Law Center in Seattle.
The $700,000 settlement that Arizona State University (ASU) made two years ago with the Havasupai—plus the return to the tribe’s care of 151 remaining blood samples from a university freezer—chilled research cooperation throughout Indian Country. Some tribes even wanted to halt any cooperation with genetic research institutions, Whitener said.
Studies Perpetuated Stereotypes
Members of the small Havasupai band had discovered that without their permission ASU scientists and graduate students had mined blood samples tribal members provided in the early 1990s for purposes beyond the diabetes studies they had agreed to.
Not only did ASU researchers publish studies and write graduate dissertations based on tribal blood samples, the studies included “things the tribe found very offensive,” Whitener said.
“Probably most offensive,” Whitener asserted, was ASU research “looking at inbreeding among this very small tribe located at the bottom of the Grand Canyon.”
The ASU and the Arizona Board of Regents formally apologized to the Havasupai, while the tribe acknowledged that the university had made “great efforts” to improve its oversight and conduct of scientific research at ASU. The Board of Regents also agreed to start an ongoing “partnership” with the Havasupai to help them build a new health clinic and high school and offer ASU scholarships to tribal members.
The Arizona State incident, Whitener explained, fueled resentment among tribal communities long angered by past grave-robbing incidents at Native American burial grounds, and “helicopter research,” that is, academic fly-overs by non-Indian researchers disconnected from the people they studied. Their articles, published in prestigious journals, would perpetuate negative stereotypes that stigmatize American Indians and Native Alaskans.
Studies Needed on Terrible Health Disparities
Speaking in San Francisco at the March conference of the Regional Centers for Minority Aging Research (RCMAR), a program of the National Institute on Aging, Whitener stressed the importance of scientific exploration “because health disparities among American Indians continue to be terrible. Without research, headway is probably going to be more difficult.”
In the wake of the Havasupai’s court victory, Whitener said, the National Congress of American Indians (NCAI) issued resolutions decrying Arizona State’s conduct, as well as resolutions telling tribes, “You need to build your research systems, so you can handle these kinds of things.”
Wresting control of genetic and behavioral research, he indicated, is also part of wider efforts by tribes to assert their independence and sovereignty.
To do so, Whitener and his colleagues obtained funding from the National Center for Research Resources and the National Human Genome Research Institute—units of the federal National Institutes on Health—to develop manuals to be released this spring that will help tribes control research by methodically reviewing proposals and instituting protections both for human subjects and the tribal communities themselves.
The “tool kits” will help ensure tribes and Indian organizations are involved at every step of research by academics, government agencies or others and will maintain ownership of data collected from their populations. One manual will be on research methods and the second will outline steps in developing such processes as ranking, selecting and managing research applications.
The center’s first step toward building a model for research other tribes could apply was for Whitener and his colleagues to conduct a survey at his own Squaxin Island tribe, located in Puget Sound.
“Go Talk to the Elders Committee”
Whitener, who was honored last year by the White House among legal-community Champions of Change, said his staff worked with his tribe’s Museum and Research Center with the approval of the Squaxin Tribal Council and oversight by the Elders Committee.
“In this tribe, what the elders believe and want is very important,” he explained. “When we proposed this, the first thing the Tribal Council said was, ‘Go talk to the Elders Committee, because we’re not moving anywhere until we know how they feel about it.’”
Initially, the project hired and trained two research assistants from the tribe, who held small-group discussions with about 190 of the Squaxin tribe’s 700 members.
Then the center’s research team developed questions for tribal members to vote on about their concerns and willingness to participate in genetic or behaviors studies. At the next annual general meeting, where tribal members congregate to elect their officials, Whitener and his crew put the questions to a vote.
Whitener and his crew asked to what degree tribal members would or wouldn’t be willing to approve of studies conducted by a such entities as a college or university, the Indian Health Service or other federal government agencies.
As expected, members were more positive toward research that includes tribal members in design, coordination, data collection and interpretation of results. Also, not wanting merely to say no to research, most members said they wanted to learn more, Whitener said.
In addition, Whitener went on, “As people became older, they became much more willing to participate in research: 67 percent being willing to participate in the genetic study,” about the same as for behavioral research studies.
He noted that 70 percent of those who voted were women. “Squaxin Island is a matriarchal society. So, generally, women wield a fair bit of authority.”
Employment, Treaty Rights, Health Issues
In the vote, the tribe’s willingness to cooperate with studies dropped significantly when they were asked if they would do so if asked by federal government agencies other than the Indian Health Service (IHS). Interest fell from two-thirds or more to only half of those voting.
Their main reason for participating in any health research, said the tribal members, was employment.
“They clearly saw the important tie to health and their ability to access employment. Unemployment still remains a real concern amongst tribes and their members,” Whitener said.
The tribe’s next priorities were maintaining treaty rights, such as their ability to continue accessing their traditional foods and ways of life through hunting and fishing, as well as cultural preservation.
“It’s not until we get to chemical dependency do we first see the traditional health issue here at Squaxin,” Whitener noted. On a list of health conditions, members’ support for research took “a huge jump when we ask about diabetes,” he reported.
Although tribal members confirmed researchers’ expectations that personal and community benefits were very important to their willingness to cooperate, the center’s team found tribal members and staff to be also keenly aware of their societal obligation.
Besides direct benefits to them, Whitener said, Squaxin Island’s voters favored going ahead with research that may not be adequately funded, might take up more time than they wish or may not really help them directly. He recalled that members told them, “You need to have people get experience from the universities.”
A principal concern, Whitener continued, is that research studies adequately train people on reservations: “When the study leaves, at least it leaves people with the tools they didn’t have before. Did it leave resources there?”
The project’s aim, he noted, is to enable tribes to analyze “when they can and can’t go forward in terms of its staff time, how beneficial something is and what the data mean.”
Tribal members were not only wary of external authorities, but when asked who should manage the tribe’s new decision-making process, they overwhelmingly voted in favor of developing a new nonprofit to provide “a little distance from the tribal council” and its agendas.
Although he expects other tribes to adapt these manuals to their own needs and traditions, Whitener hopes the tool kits will also convey the Squaxin Island tribe’s independent spirit. From taking control of its health clinic from the Indian Health Services in the 1970s to fighting for traditional hunting and fishing rights, he said, “We’re a very aggressive tribe in terms of taking back our sovereignty.”