Amy Harmon returned to the NY Times last weekend with a story about the court settlement between Arizona State University and the Havasupai tribe (“Indian tribe wins fight to limit research of its DNA”).
The story explains the details of the case well – in 1990, geneticists started taking samples for research on the causes of diabetes; samples were stored and later applied to other research questions, some of which were objectionable to the tribe’s members.
I’m quoting the following passage at length, because it really shocked me when I read it:
But a few years later, a graduate student using new technology came up with a way to discern variations in the Havasupai DNA, which was stored in a university freezer, and he wrote a dissertation based on his research. Carletta Tilousi, one of the few Havasupai to attend college, stopped by Professor Martins office one day in 2003, and he invited her to the students doctoral presentation. Ms. Tilousi understood little of the technical aspect, but what she heard bore no resemblance to the diabetes research she had pictured when she had given her own blood sample years earlier. Did you have permission, she asked during the question period, to use Havasupai blood for your research? The presentation was halted. Dr. Markow and the other members of the doctoral committee asked the student to redact that chapter from his dissertation.
Wow. Talk about a horrifying situation, for both students. The doctoral student clearly shouldn’t have been given the samples. Harmon continues to describe the subsequent events and investigation, giving a picture of the importance of education bringing information into these communities.
Dan Vorhaus gives some additional perspective on the settlement, from a legal perspective. He discusses the legalities of informed consent and how those have been refined over the years. He also touches on the Personal Genome Project strategy of complete openness – which he speculates might itself fall victim to future technological developments.
Also last week, Anne Buchanan touched on the issue of stored samples and informed consent. In “The fierce non-controversy”, she describes the disposition of James Neel’s DNA samples from the Yanomamo Indians of Brazil, and the long process of arranging for their repatriation. Some are in Ken Weiss’ lab at Penn State, and Buchanan describes the political and practical problems that remain to be resolved:
One issue is that, as we do every sample that comes through our lab, we have treated these bloods as potentially biohazardous. Not because we know anything specific about these samples that would, after 50 years, make them still potentially harmful, but because we always err on the side of caution. The samples have been deep-frozen so that some pathogens could in principle have survived. Since we don't know what will be done with the bloods once they are back in Brazil, this is something that Ken has discussed with every official who contacts him about their return. We are currently still waiting to hear from the Brazilian embassy how best to ensure they are safe and delivered to the proper recipients in Brazil. Meanwhile, in spite of the fact that this is a non-issue, as these bloods will be returned when the logistics are worked out, and that has always been true, agreed to by all those labs that currently house such samples, for years an American anthropologist has masterminded numerous online letter writing campaigns to stir up undergraduates who are not properly informed about what's been going on, to demand the repatriation of these bloods.
Again, we see how it makes a difference who has information and how they get that information to relevant communities. There is much more in the post and it provides a very good companion to Harmon’s piece, if you’re thinking of students.