Wednesday, August 11, 2010

After Lawsuit, Arizona State IRB Hindered Native American Interviews

Kimberly TallBear, assistant professor of science, technology, and environmental policy at Berkeley, describes her encounters with IRBs there and at Arizona State University. At the latter, the IRB imposed conditions that made her abandon plans to interview Native Americans.

["Interview with Kimberly TallBear," GeneWatch, May/June 2010.]

As she puts it:

IRBs vary from university to university, and some are much stricter than others. For example, the Arizona State University IRB is, after the Havasupai lawsuit, incredibly strict where tribes are concerned. If you're going to do research with native populations, whether it's biological research or even social science research, you have to get approval from the tribal council before the university will even look at your protocol. On the other hand, I'm doing a project at Berkeley where I'm interviewing both genetic scientists and tribal government people, and Berkeley didn't look twice at my interview with indigenous people. I asked if they require some sort of documentation that I got approval from the tribe, and they said, "No, no, no, that's not a problem." So there are differences between IRBs as well as between disciplines . . .

I'm not an expert on IRBs, but I can speak from personal experience—I have worked at both Arizona State and Berkeley, so I have seen the huge differences in IRBs. In short, the difference is that ASU has been sued. Before the Havasupai suit, ASU was lax as well.

I was at ASU in 2006 and 2007. As a social scientist, I was interviewing a range of people—native people, scientists, regulators—and the IRB was very strict about allowing me to talk to tribes. I had interviewees at five or six tribes, which meant I would have had to go through each one of those tribes to get approval for those interview questions. So, in order to get approval for my science piece, I backed out of the Native American community member questions.

This was also really interesting: I study the culture and politics of genetic science, and I think they should have been more strict and careful about my research questions for scientists. In my work, scientists are potentially vulnerable subjects. Now, I don't actually think they are very vulnerable—I think they actually have a lot more cultural authority than I do in the broader world—but I'm a potential critic. While the native populations were seen as potentially vulnerable subjects, it didn't seem to have crossed the IRB's minds that scientists could be potentially vulnerable subjects, too.

It was the opposite at Berkeley, actually: they were much, much more concerned about my questions for scientists and protecting their confidentiality, and they seemed not at all concerned about my questions for indigenous people, at least from my perspective.

TallBear does not appear angry that the the ASU IRB's strictness forced her to "back out" of planned interviews. Rather, she seems to wish that IRBs were even stricter: "What IRBs require is a bare minimum of the standards that you have to meet to conduct ethical research. IRB approval doesn't constitute a thorough process." And, later, "you see people who have just decided they don't want to work with tribes, because they don't want to have to go through a tribal research review board, they don't want to let a tribal council or a tribal IRB have a say over whether they can publish something or not. I think that's a good thing . . . Go do something else!"

It is not clear from the published interview whether she believes that such discouragement is appropriate only for geneticists and other biomedical researchers, or if she is happy to let tribal governments control the writings of social scientists and journalists as well.


Anonymous said...

She also does not indicate whether ASU won or lost the suit, but it does underscore that a major issue with IRBs is not the protection of research subjects, but the protection of the university.

Zachary M. Schrag said...

Thank you for your comment.

The lawsuit was settled in April 2010; see the Amy Harmon, "Indian Tribe Wins Fight to Limit Research of Its DNA," New York Times, 21 April 2010.

I do think this is an illustration of a university restricting social scientists after the misdeeds of biomedical researchers.

Anonymous said...

Thanks for the link. I was struck by a charge mentioned in the article, that one form of "harm" experienced by the Havasupai was that the DNA evidence contradicted their origin myths. An interesting point -- presumably anthropologists studying native peoples will have to be cautious not to publish anything that contradicts their traditional beliefs. And historians will have to be careful not to publish facts that contradict popular stories.

Zachary M. Schrag said...

Thank you for this comment.

Federal regulations specify that an IRB "should not consider possible long-range effects of applying knowledge gained in the research (for example, the possible effects of the research on public policy) as among those research risks that fall within the purview of its responsibility." [45 CFR 46.111] But since the early 1970s, there have always been some people who do want to restrict research on such a basis.

Another wrinkle here is that had TallBear followed her IRB's instructions to seek approval for interviews from a tribal IRB, it might have been powerless to impose any restrictions on her research, due to the Indian Civil Rights Act. I do not know of any case law on this.