The Havasupai tribe of Arizona appear to have won a major legal - and, most particularly, moral - victory over unscrupulous researchers. The New York Times reports:
Seven years ago, the Havasupai Indians, who live amid the turquoise waterfalls and red cliffs miles deep in the Grand Canyon, issued a “banishment order” to keep Arizona State University employees from setting foot on their reservation — an ancient punishment for what they regarded as a genetic-era betrayal.
Members of the tiny, isolated tribe had given DNA samples to university researchers starting in 1990, in the hope that they might provide genetic clues to the tribe’s devastating rate of diabetes. But they learned that their blood samples had been used to study many other things, including mental illness and theories of the tribe’s geographical origins that contradict their traditional stories.
The geneticist responsible for the research has said that she had obtained permission for wider-ranging genetic studies.
Acknowledging a desire to “remedy the wrong that was done,” the university’s Board of Regents on Tuesday agreed to pay $700,000 to 41 of the tribe’s members, return the blood samples and provide other forms of assistance to the impoverished Havasupai — a settlement that legal experts said was 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 case raised the question of whether scientists had taken advantage of a vulnerable population, and it created an image problem for a university eager to cast itself as a center for American Indian studies.
But genetics experts and civil rights advocates say it may also fuel a growing debate over researchers’ responsibility to communicate the range of personal information that can be gleaned from DNA at a time when it is being collected on an ever-greater scale for research and routine medical care.
“I’m not against scientific research,” said Carletta Tilousi, 39, a member of the Havasupai tribal council. “I just want it to be done right. They used our blood for all these studies, people got degrees and grants, and they never asked our permission.”
Researchers and institutions that receive federal funds are required to receive “informed consent” from subjects, ensuring that they understand the risks and benefits before they participate. But such protections were designed primarily for research that carried physical risks, like experimental drug trials or surgery. When it comes to mining DNA, the rules — and the risks — are murkier.
Is it necessary, for instance, to ask someone who has donated DNA for research on heart disease if that DNA can be used for Alzheimer’s or addiction research?
Many scientists say no, arguing that the potential benefit from unencumbered biomedical research trumps the value of individual control.
“Everyone wants to be open and transparent,” said Dr. David Karp, an associate professor of internal medicine at the University of Texas Southwestern Medical Center in Dallas, who has studied informed consent for DNA research. “The question is, how far do you have to go? Do you have to create some massive database of people’s wishes for their DNA specimens?”
The Havasupai settlement appears to be the first payment to individuals who said their DNA was misused, several legal experts said, and came after the university spent $1.7 million fighting lawsuits by tribe members.
Even as the Havasupai prepared to reclaim the 151 remaining blood samples from a university freezer this week, Therese Markow, the geneticist, defended her actions as ethical. Those judging her otherwise, she suggested, failed to understand the fundamental nature of genetic research, where progress often occurs from studies that do not appear to bear directly on a particular disease.
“I was doing good science,” Dr. Markow, now a professor at the University of California, San Diego, said in a telephone interview.
There's more at the link.
I feel particularly strongly about such issues because I've run into them in Africa as well, where tribes were approached to get their permission for research, only to have that research go far beyond what had been agreed, to the point where the tribe was exploited and/or disadvantaged in one or more ways. I don't understand how or why scientists and corporate researchers so often feel that they can do anything they like, without bothering to get explicit and specific permission from their research subjects. It's a sort of blind arrogance that justifies anything on the grounds that it's 'good science' or 'necessary'. That's simply not good enough.
I'm very glad that the Havasupai have won their case at last. One hopes it'll help others who find themselves in similar situations in future.
Peter
7 comments:
Peter, interested in your thought process. I have a little trouble following the possible problems argument. When a clear light is shown on a misconception does the misconception trump the truth because its socially convent?
To me the lawsuit explains the cultural thinking that has left the tribe in a quagmire. The insistence on a tribal belief regardless of data leading to a different conclusion. At what point does your belief become more important than your success.
Bruce, it's not the research that's the problem - indeed, I can sympathize with any scientist wanting to test everything he or she can. The problem is their assumption that they can do so without bothering to get full permission from their subjects, or explaining to them precisely what it is that they want to achieve. It's the attitude of the scientists, rather than the science itself, that troubles me.
Indians again prevail over science and suck more money out of the rest of us over ridiculous superstition.
This was raw opportunism.
I don't understand how the members of the tribe were injured. Having someone claim that there is evidence contradicting your beliefs is not injury.
Scout, if you had been robbed blind for more than 400 years, you would feel differently about it.
As you would if a part of your body were held up as "proof" your beliefs are absurd.
Stranger
"Is it necessary, for instance, to ask someone who has donated DNA for research on heart disease if that DNA can be used for Alzheimer’s or addiction research?
Many scientists say no, arguing that the potential benefit from unencumbered biomedical research trumps the value of individual control.
“Everyone wants to be open and transparent,” said Dr. David Karp, an associate professor of internal medicine at the University of Texas Southwestern Medical Center in Dallas, who has studied informed consent for DNA research. “The question is, how far do you have to go? Do you have to create some massive database of people’s wishes for their DNA specimens?” "
Yes, as patient and a human being with feelings and emotions and a thinking brain and reasoning -- YES! Every time you, as a scientist, want to use some portion of MY BODY and DNA for another line of research -- you need to ask my permission. It shouldn't take long, and I'll more then likely give permission. But just go ahead with your research WITHOUT asking, and I'll DEFINITELY say "NO" (contrary cuss that I am), thus wasting all your research, time, and grant money.
I remember that there was an episode of STNG that covered that very subject. Lt Riker's DNA had been used without his permission to clone an entire race of colonists. Very intriguing. I remember thinking one way about it at the ime, but now I'm sure my opinion would be different.
B Woodman
B W
I can understand the moral question of creating life scientifically and agree with you there. I see this as a bit different, trying to identify and catalog existing conditions for knowledge and intended benefit.
We can argue intended benefit vrs scientific madness, but simply identifying conditions is a good endeavor of humanity it seems to me.
Post a Comment