At issue in the Havasupai case was whether an Arizona State geneticist had obtained permission from tribal members to use their DNA for anything other than finding clues to Type 2 diabetes. More than 200 of the 650-member tribe signed a consent form stating that their blood could be used to “study the causes of behavioral/medical disorders,” but many said they had believed they were donating it only for the study of diabetes, which tribal members suffer from at extraordinarily high rates. When they learned years later that the DNA samples had been used to investigate things they found objectionable, they felt betrayed.
Some have proposed an international tribunal akin to the Helsinki human rights agreement, which would lay out the ethical obligations to research participants. Others suggest staying in touch with subjects so they can be consulted on new projects — and because under current practices they tend to learn of breakthroughs based on their own DNA only if they become close readers of scientific journals.
Courts have ruled that individuals do not have a property right to their cells once they are taken in the course of medical care, but they do, under federal guidelines, have a right to know how they will be used. Complicating matters is the increasing impossibility of ensuring that DNA data can remain anonymous. Do participants need to be told that their privacy cannot be guaranteed? Can “blanket” consent up front do the trick, or is even that misleading because researchers can’t adequately describe the scope of studies they have yet to design? Is it O.K. to use DNA collected for heart research to look for genetic associations with intelligence, mental illness, racial differences?
For one thing, “we have to communicate a hell of a lot better to the public what is going on when we put their specimens in our biobanks,” said Stephen J. O’Brien, a geneticist who runs the Laboratory of Genomic Diversity at the National Institutes of Health.
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.”
Others questioned whether they could have unwittingly contributed to research that could threaten the tribe’s rights to its land. “Our coming from the canyon, that is the basis of our sovereign rights,” said Edmond Tilousi, the tribe’s vice chairman.
Oh boy - the last issue adds a whole other layer of political complications. Combine it all together and we return to the basic issue of trust. My fellow scientists - lets be careful and open about how we present our research.