In 2004, the Havasupai tribe filed a lawsuit against Arizona State University for misuse of their members’ DNA samples. The legal action was prompted by the discovery that the Havasupai’s blood had been used to study conditions for which they had not given consent, after the original research that began in 1989 to investigate type II diabetes was unsuccessful. The case was settled in 2010; the university paid $700,000 to 41 tribe members, returned their blood samples, and provided funding for a clinic and a school. A headline in The New York Times declared, “Indian Tribe Wins Fight to Limit Research of Its DNA.” However the issue, and the concerns it raises, have come roaring back, and are unlikely to disappear anytime soon.
Science writer Ricki Lewis stirred up the debate with an article provocatively titled “Is the Havasupai Indian Case a Fairy Tale?” Lewis argues that the wrongs claimed by the tribe “never happened.” She accuses the media of failing to look at primary documents and simply recycling false information. She seems to have talked in depth to the geneticist who carried out the work, Teri Markow, and uncovered some interesting information, but she does not appear to have spoken to, or quoted, a single member of the Havasupai tribe.
This omission is interesting given that just a week earlier, Lewis compared the Havasupai case to that of Henrietta Lacks’ cells being taken and used without her consent, which was in the news again precisely because her family members were finally being consulted by scientists. The family reached an agreement with Francis Collins, the director of the National Institutes of Health (NIH), that they would allow research on the cells to continue, but that from now on NIH projects will have to seek approval from a committee that includes Lacks’ family members.
Even though Lewis offered the disclaimer that she’ll “leave the HeLa news to the other bloggers,” there was something unsettling about her use of the announcement as a hook to discount the Havasupai’s claims and to defend Markow’s misuse of their DNA.
Evolutionary anthropologist Jonathan Marks has now explored Lewis’ points in detail. Marks is familiar with the original documents surrounding the case and notes that Markow has been unable to produce either the informed consents she claimed she had obtained, or her grant proposal, which according to the Hart Report (the document produced by Arizona State’s investigation in 2003) did request funds to research schizophrenia in the Havasupai.
Marks points out that though Markow may never have published specifically on Havasupai schizophrenia, the contention has been over whether she studied it without informed consent. Marks, Lewis, and Markow engaged in a heated debate on these issues until the PLOS BLOGS Network Community Manager closed further comments on the post. Markow defended herself, but never said outright that she didn’t study schizophrenia, which was the central question. Neither would she answer Marks’ question about whether the conclusion that can be drawn is that she has “received funding from an agency that focuses on schizophrenia, without any intention of actually studying schizophrenia, and ultimately performing no science related to that illness.”
For the Havasupai, informed consent was not merely a bureaucratic step. The implications of genetic research are particularly culturally sensitive. For example, migration studies can contradict origin stories, “inbreeding coefficients” can lead to stigmatization, and efforts to use DNA testing to determine membership and identity can problematize tribal sovereignty. In the initial lawsuit, the Havasupai claimed that the research carried out without their consent led to “misrepresentation, infliction of emotional distress, conversion, violation of civil rights, and negligence.”
Lewis told Marks that "science has nothing to do with belief, it is about data and evidence." But this is a problematic assertion. Like all endeavors, science must be understood as being integrated with its social, cultural and political context. As science journalist John Horgan recently wrote, “All truth claims–whether scientific, religious or political—reflect the prejudices and desires of those who make them.”
A perfect example of this can be found in a new study in Science, which Jonathan Latham covered in a fascinating article. The study found three gene variants that each contribute 0.02% to variation in educational attainment, and because the researchers were funded to find genetic explanations, this is what they reported. What they completely ignored is the much more striking implication of their research – that more than 98% of variation in education attainment is based on factors other than a person’s basic genetic makeup.
When scientists assert, as they did in the Havasupai case, that everyone would be on board if they only explained their research goals better, they overlook the fact that science is not neutral, and that progress is not merely a top down affair. Now that informed consent is mandatory (though its applications are often murky), dissent from certain applications of biological materials must be respected. As Marks states, “The lesson we learned around the middle of the last century is that the progress of science is great, but when it bumps up against human rights, human rights wins, hands down.”