In 1990, members of the Havasupai tribe in Arizona gave researchers at Arizona State University some DNA samples in order to see if the scientists could find a cause for the tribe's high incidence of diabetes. But, as the New York Times' Amy Harmon reports, the tribe sued when they found out that the geneticists were also using the blood samples to study mental illness and theories of the tribe's geographical origins. ASU agreed to a settlement, which, Harmon reports, is significant "because it implied that the rights of research subjects can be violated when they are not fully informed about how their DNA might be used." The tribe says it isn't against genetic testing of the sort done on the blood samples of its members — but that the university should have gotten permission first. But some scientists, Harmon writes, say that "the potential benefit from unencumbered biomedical research trumps the value of individual control." In other words, if you give a blood sample to test for diabetes, the researchers shouldn't have to get your permission to also test for heart disease.
Genomics Law Report's Dan Vorhaus says the case "shines a light" on the important problem of what it really means to give informed consent for genomic research. "The informed consent requirement is here to stay," Vorhaus writes, "[but] it is impossible to ignore the difficulties that informed consent requirements impose." For example, he says, truly informed consent for genomic research might require that the participants have a deep understanding of the underlying science, which sets too high a bar. It's also difficult for researcher to fully explain to patients the benefits and risks of genomic research when the researchers themselves may not fully know. "We need to think creatively about the ethical and legal framework in which such research is conducted," Vorhaus says.
The Gene Expression blog's Razib Khan says the tribe's offended feelings shouldn't stand in the way of scientific progress, but has "some sympathy" for the idea that the tribe has "implied property rights" to its own genetic material. However, Khan suggests that we may see this problem crop up again. "This sort of stuff is interesting because there are a lot of samples out there I assume being used from a time before consent was as formalized," he says.