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After DNA Misuse, Researchers Banished From Havasupai Reservation
bbsguru writes "A court settlement has ended a controversial case of medical privacy abuse. From the NYTimes: 'Seven years ago, the Havasupai Indians, who live in the deepest part of 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 tribe had given DNA samples to university researchers starting in 1990, hoping they might provide genetic clues to the tribe's high rate of diabetes. But members learned their blood samples also had been used to study many other things, including mental illness and theories of the tribe's geographical origins that contradict their traditional stories.'"
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.
Go to a reservation public school like I did.
Second year of High School there was a year long course, mandatory for graduation call "Tribal Government", except it wasn't tribal government it was a year of Lakota mythology and religion. Even though I'm not a member of the tribe, I had to take it, as did folks who weren't American Indian, the school board which was 4/5th white would not allow kids to opt out because BIA funding was dependent on it being taught. A non-tribal member could not get a grade better than B+ because "they weren't capable of understanding it fully".
In biology classes we had a day during evolution of "Lakota creation myth". Again, BIA funding mandated it.
From the looks of the article, it seems more like a case where the people were told but didn't understand the ramifications of their decision:
The consent form was purposely simple, Dr. Markow said, given that English was a second language for many Havasupai, and few of the tribe’s 650 members had graduated from high school. They were always given the opportunity to ask questions, she said, and students were also instructed to explain the project and get written and verbal consent from donors.
So, were they mislead, or is this more of a type of "buyers remorse"? There are plenty of places where the local population is uneducated and unlikely to fully understand genetic testing, should we stop studying them, and in the process deny them the good (potential treatments for disease that they suffer from) to protect them from "the bad" (the possibility that their world-view will be challenged, or that the data will be applied to larger studies)?
Also, one of the big issues here seems to be that the findings contradict their folklore:
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.”
So science showed that their fable about springing from the ground in this canyon was, at best, unlikely. So what. We don't accept that the Earth is the center of the universe, that sex with virgins cures disease, that human sacrifice improves crop yield, or that it's turtles all the way down, why should we care about this story either. I'm not inclined to "turn off" science just because results show that a stone-age story is just a story.
Some bring out the best in others, some the worst. Some bring out far more.
I live not too far from the Havasupai reservation and I have to tell you that these Indians are not playing with a full deck.
For example, they try to license the air space over the reservation, regardless of the fact that the FAA has told them many times that only the FAA may do that.
They (the Havasupai's) bend the laws to their own will and then when someone tries to go after them, they hide on their reservation where you can't serve them with any notices and even if you did, they would ignore them.
Beer is proof that God loves us and wants us to be happy.
There was already fallout from cases like this when it was first discovered in the mid-nineties. I grew up more or less on the Navajo reservation, and remember sitting in on a PTO meeting as a high school student. There was a doctor there who was explaining the diabetes screening that was going to be taking place in the coming months.
She was a Navajo gal who had returned to the res after getting her degree (despite the fact that she could have got a much better job elsewhere), and had managed to secure a government grant to perform free diabetes screening of every native student in the district. I thought this was a great thing given the high rate of diabetes on the res, the low health care coverage, and the importance of detecting diabetes early.
However, one of the school board members, who also held a tribal government post, kept railing on her and accusing her of all kinds of crap, including asking why she hadn't gotten permission from her as a tribal officer first (in fact the doctor had, and even had papers signed by the board member with her). At first I thought it was just because she was a territorial bitch (she was). However, after later hearing about this case, I understood why she was so sensitive to this particular issue, and agreed that her concerns (although not her behavior) were absolutely justified.
That would be true, but TFA says:
Roughly 100 tribe members who gave blood from 1990 to 1994 signed a broad consent that said the research was to “study the causes of behavioral/medical disorders.”
Yes, Diabetes was their primary motivation, but they signed on for more than that. The problem seems to be that they didn't like what happened later and regretted that decision.
Some bring out the best in others, some the worst. Some bring out far more.
I'm torn here. On the one hand, I would not want research on tissue samples being done outside of the scope of the informed consent permissions document under which the samples were collected. If that did, indeed, occur, the researchers lied to their test subjects. That is all kinds of unethical.
And it should have been blocked by the local Institute Review Board (IRB) who is supposed to oversee research involving samples of human tissue for this very reason (shades of Tuskege and vulnerable populations come immediately to mind). Either the researchers didn't get IRB approval, which is a career-ending mistake, or the IRB gave approval for what seems to be unethical use of the samples.
Neither of those seem likely so I'm betting there's more to the story here.
For those who are interested in understanding more about regulations concerning human research, the basis for current theory and practice is something called The Belmont Report (use Google). Also, for Federally Funded research, DHHS has specific guidelines (based on The Belmont Report recommendations): http://www.hhs.gov/ohrp/irb/irb_guidebook.htm
Put my fist through my alarm clock with its ding-dong death inside my ear. - The Blackjacks.
I a bit of background. My dear lady has Leukemia. A particularly nasty type. She has undergone Treatment and came through in great shape, so well that after 2 years there is no sign of it coming back. Remission is a good thing. Now I do not know if you are aware of this, but most research work on this nasty problem occurs at only a handful of major research centers. They also do the vast majority of the final diagnostic work. Anyway, Several weeks ago she had to go into the office and have a blood draw for CBC and the like. At the time the Doctor asked if she was willing to allow the Mayo Clinic have some blood for testing to see if there is a genetic reason she did so well and other do poorly. She agreed. To make a short story even shorter there was a document that needed to be signed that stated exactly what test were to be done and that any additional testing would require authorization in writing. I asked why all the paperwork. The Dr. response, " it is the right thing to do, morally and legally" So this is how it works. They have no right to do any tests other than those that were authorized and a violation would be a breaking of a legally binding contract. And remember, that is what it is, a legally binding contract.