An Indian tribe has settled a claim their DNA was misused by scientists, writes David Usborne
Thunder was in the forecast this week as members of the Havasupai, a tiny Indian tribe that lives deep inside the gorges of the western Grand Canyon, prepared for a day of ritual that had been a long time coming.
Blood was to be mourned; blood of the dead and of the living. Blood, more importantly, that had been wrongfully purloined.
After prayers, dancing and singing in Supai Village on the canyon floor, the assembled vials were due to "rest" for four days.
On Monday they will be interred and an episode that began nearly 20 years ago, with the drawing of blood from tribe members by scientists at Arizona State University for a DNA research project, will be over.
It is a time of mourning but also rejoicing that started when the university settled a lawsuit filed against it by the tribe, which numbers just over 600 souls.
Their claim was straightforward legally but heavily freighted with emotion and spiritual meaning.
The outcome will have repercussions for scientists everywhere who, when handling DNA, may have to think more deeply about the rights of those who surrender it.
What was advertised as an exercise in benevolence began in 1990, when an ASU scientist approached the tribe with an idea: its members had for years suffered from an unusually elevated rate of type 2 diabetes, ravaging its ranks and leading to amputations even among some of its young.
If tribe members would agree to surrender some of their blood, the university would try to establish what genetic links might lurk behind its struggles with the disease.
This was no easy decision for the Indians, for whom blood holds grave sacred significance. The souls of their dead cannot not rest with the spirits if any part of their physical body is absent at the time of burial, fluids included.
But this was a disruption to their religious rhythms they were prepared to take. Between 1990 and 1994, about 200 samples were drawn and taken away for the scientists to analyse.
In the end, hopes for a genetic answer to their diabetes riddle were dashed. But there was something else they didn't know: over time, the blood had been released for other research projects, sometimes by senior ASU scientists and even by graduate students completing a thesis for their finals.
The betrayal was discovered by Carletta Tilousi, a tribal councilwoman and one of those who gave blood, seven years ago.
It wasn't just that the tribe had been under the impression their DNA was for diabetes research only. Almost more upsetting was the nature of the other avenues that had been pursued with the help of their samples. There had been studies on schizophrenia among the Havasupai and the impact on their community of inbreeding.
One student penned a thesis using the Havasupai DNA, and asserted their ancestors had hailed from Asia, arriving on the North American continent after a migration via the Bering Straits.
It was a version of history that directly contradicts the traditional tribal teachings that made the Grand Canyon itself the origin of the Havasupai. Indeed, this is what gave them their sovereignty and their claim to be the guardians of the Canyon.
Under settlement, the university, led by its Board of Regents, agreed to pay US$700,000 ($987,000) to the Havasupai to be shared between the 41 plaintiffs.
It will also work with the tribe to help raise financing for scholarships for its young, for a new high school in their village and a medical clinic. Perhaps most importantly, the remaining blood, stored in vials in a deep freezer at the university's science centre, will be returned.
"The Board of Regents has long wanted to remedy the wrong that was done," the board said. "This solution is not simply the end of a dispute but is also the beginning of a partnership between the universities, principally ASU, and the tribe."
Members of the tribe had initially asked for tens of millions of settlement cash, but their lead lawyer, Albert Flores, hailed the deal as "the start of something good" for the tribe.
Similarly satisfied was the chairwoman of the tribal council, Bernadine Jones, who said the settlement "is far more than dismissing a lawsuit ... the settlement is the restoration of hope for my people, and the beginning of nation building for my tribe."
It was the job of Tilousi to take custody of the blood on Thursday. From the ASU campus at Tempe, Arizona, she was to take the samples by van to the rim of the Canyon from where a helicopter would take her to the floor. (Normally, access to Supai Village means a steep 18km trek.)
Some who gave blood are still living. But others are dead, caught in limbo until their blood is buried with them.
"Their spirits will no longer be locked in a cooler," Tilousi said. "We are going to take them back down to Supai Canyon so they can rest in peace."
Her own elders are among those trapped between the Earth and celestial rest, including an aunt, an amputee, who died from diabetes last year.
"I'm holding my breath until the blood samples of my grandfather, my great-grandmother and my relatives reach the floor of the Grand Canyon."
In spite of the settlement, the argument over whether the tribe gave its permission for the DNA to be used in research beyond the original diabetes project or if it was duped, remains unresolved.
"I was doing good science," insisted Dr Therese Markow, who instigated the co-operation with the Havasupai in 1990. She is now a professor at the University of California, San Diego.
She told Nature magazine: "I'm glad it's over; but it never should have happened. There was no basis for any claim. They would have lost had it gone to trial."
Some experts concurred that the fall-out may be far and wide impacting the assumptions made by scientists about what they can do with DNA once it is in their possession.
Some may be reluctant to accept the implication of the settlement that consent must be given before a person's genetic information can be used for research in new areas.
David Karp of University of Texas Southwestern Medical Center who has focused on the importance of DNA research versus the rights of those who give it, told The New York Times: "Everyone wants to be open and transparent. 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?"
VICTORY FOR TRIBE, DEFEAT FOR SCIENCE
The compensation awarded to the Havasupai Indians is a victory for an isolated tribe. Its impact on medical research is harder to discern at this early stage but could be devastating.
DNA is a waste product. We shed it all the time. It carries our personal information which can identify us but provided it is anonymised, no harm is done. If a scientist collects it and can do something useful with it, we should celebrate their achievement.
The trickier question is what happens when a scientist uses an individual's or - as in this case - a tribe's DNA to create something with commercial value. Scientists cannot patent DNA per se - it occurs naturally - but if they can add intellectual value to it, it may become a saleable property.
There is no evidence that this happened to the DNA supplied by the Havasupai Indians. Instead they feared that the information it yielded could damage their interests, for example by undermining their claim to their tribal lands.
As a result they have won compensation on the basis that research was done on their DNA to which they did not consent.
Is it practical to require scientists to seek consent for research on DNA? The rules on consent to medical procedures were devised for situations involving physical risk, such as surgery, or trials of a new drug. Patients facing these risks must be informed about and have accepted them, before treatment can proceed.
Research on DNA would become unmanageably cumbersome if everyone who had given DNA had to have their wishes recorded. Moreover, it is in the nature of genetic research that progress often comes from studies that do not appear to bear directly on a particular disease.
The Havasupai Indians have been compensated for the hurt they have been caused by the way the research was conducted. But it is important that the outcome of this case does not inhibit future genetic research.
Although their own DNA did not yield insights into the causes and treatment of the Type 2 diabetes that has devastated their community, future studies may do so. The need is immense.
Diabetes is rising around the world and poses a huge global health challenge. Doctors predict that from 170 million affected in 2000, the total will rise to 370 million by 2025, leading to an epidemic of amputations and blindness, the two commonest effects of the condition.
- INDEPENDENT
