I don’t have any deep ethical insight, but 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. Sounds like the scientists probably oversold the practical applications of their research…like they would to a grant committee. Tribe Wins Fight to Limit Research of Its DNA:
“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.
But months later, tribe members learned more about the research when a university investigation discovered two dozen published articles based on the blood samples that Dr. Markow had collected. One reported a high degree of inbreeding, a measure that can correspond with a higher susceptibility to disease.
Ms. Tilousi found that offensive. “We say if you do that, a close relative of yours will die,” she said.
Another article, suggesting that the tribe’s ancestors had crossed the frozen Bering Sea to arrive in North America, flew in the face of the tribe’s traditional stories that it had originated in the canyon and was assigned to be its guardian.
Listening to the investigators, Ms. Tilousi felt a surge of anger, she recalled. But in Supai, the initial reaction was more of hurt. Though some Havasupai knew already that their ancestors most likely came from Asia, “when people tell us, ‘No, this is not where you are from,’ and your own blood says so — it is confusing to us,” Rex Tilousi said. “It hurts the elders who have been telling these stories to our grandchildren.”
I guess I have more sympathy with the idea that you might have some implied property right to how your genetic information is used than I do with being offended because your primitive beliefs might be overturned (there is no way that American Indian land claims are based on paleoanthropology in any practical terms). Creationism is primitive too, and many evangelical Christians are “offended” at the idea that they might share common descent from apes. So?
Genomics Law Report has more commentary.
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