Blood feud in the Grand Canyon

A university project to study the high rate of diabetes among the Havasupai Indians has ended in a $700,000 payout – and claims of betrayal

Thunder was in the forecast yesterday 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 earlier this week 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 that had made use of the Havasupai DNA asserting that 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 gave the Grand Canyon itself as 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 $700,000 (£455,000) 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 in a statement. "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 Ms Tilousi to take custody of the blood at 6am yesterday. 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 11-mile 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," Ms 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," insists Dr Therese Markow, who instigated the cooperation with the Havasupai in 1990. She is now a professor at the University of California, San Diego. She told Nature magazine last night: "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?"

PROMOTED VIDEO
Have you tried new the Independent Digital Edition apps?
News
ebookA unique anthology of reporting and analysis of a crucial period of history
Life and Style
fashionHealth concerns and 'pornified' perceptions have made women more conscious at the beach
Arts and Entertainment
tv
Sport
Ojo Onaolapo celebrates winning the bronze medal
commonwealth games
Arts and Entertainment
Rock band Led Zeppelin in the early 1970s
musicLed Zeppelin to release alternative Stairway To Heaven after 43 years
Arts and Entertainment
High-flyer: Chris Pratt in 'Guardians of the Galaxy'
filmHe was homeless in Hawaii when he got his big break. Now the comic actor Chris Pratt is Hollywood's new favourite action star
Sport
Van Gaal said that his challenge in taking over Bobby Robson's Barcelona team in 1993 has been easier than the task of resurrecting the current United side
footballA colourful discussion on tactics, the merits of the English footballer and rebuilding Manchester United
Life and Style
Sainsbury's could roll the lorries out across its whole fleet if they are successful
tech
Travel
The shipping news: a typical Snoozebox construction
travelSpending the night in a shipping container doesn't sound appealing, but mobile crash pads are popping up at the summer's biggest events
Arts and Entertainment
'Old Fashioned' will be a different kind of love story to '50 Shades'
film
Arts and Entertainment
Tracey Emin's 'My Bed' is returning to the Tate more than 15 years after it first caused shockwaves at the gallery
artTracey Emin's bed returns to the Tate after record sale
Arts and Entertainment
Smart mover: Peter Bazalgette
filmHow live cinema screenings can boost arts audiences
Environment
Neil Young performing at Hyde Park, London, earlier this month
environment
Independent
Travel Shop
the manor
Up to 70% off luxury travel
on city breaks Find out more
santorini
Up to 70% off luxury travel
on chic beach resorts Find out more
sardina foodie
Up to 70% off luxury travel
on country retreats Find out more
Latest stories from i100
Have you tried new the Independent Digital Edition apps?
Independent Dating
and  

By clicking 'Search' you
are agreeing to our
Terms of Use.

iJobs Job Widget
iJobs General

Project Coordinator

Competitive: The Green Recruitment Company: The Organisation: The Green Recrui...

Project Manager (HR)- Bristol - Upto £400 p/day

£350 - £400 per annum + competitive: Orgtel: Project Manager (specializing in ...

Embedded Linux Engineer

£40000 - £50000 per annum + competitive: Progressive Recruitment: Embedded Sof...

Senior Hardware Design Engineer - Broadcast

£50000 - £65000 per annum + Benefits: Progressive Recruitment: Working for a m...

Day In a Page

Save the tiger: The animals bred for bones on China’s tiger farms

The animals bred for bones on China’s tiger farms

The big cats kept in captivity to perform for paying audiences and then, when dead, their bodies used to fortify wine
A former custard factory, a Midlands bog and a Leeds cemetery all included in top 50 hidden spots in the UK

A former custard factory, a Midlands bog and a Leeds cemetery

Introducing the top 50 hidden spots in Britain
Ebola epidemic: Plagued by fear

Ebola epidemic: Plagued by fear

How a disease that has claimed fewer than 2,000 victims in its history has earned a place in the darkest corner of the public's imagination
Chris Pratt: From 'Parks and Recreation' to 'Guardians of the Galaxy'

From 'Parks and Recreation' to 'Guardians of the Galaxy'

He was homeless in Hawaii when he got his big break. Now the comic actor Chris Pratt is Hollywood's new favourite action star
How live cinema screenings can boost arts audiences

How live cinema screenings can boost arts audiences

Broadcasting plays and exhibitions to cinemas is a sure-fire box office smash
Shipping container hotels: Pop-up hotels filling a niche

Pop-up hotels filling a niche

Spending the night in a shipping container doesn't sound appealing, but these mobile crash pads are popping up at the summer's biggest events
Native American headdresses are not fashion accessories

Feather dust-up

A Canadian festival has banned Native American headwear. Haven't we been here before?
Boris Johnson's war on diesel

Boris Johnson's war on diesel

11m cars here run on diesel. It's seen as a greener alternative to unleaded petrol. So why is London's mayor on a crusade against the black pump?
5 best waterproof cameras

Splash and flash: 5 best waterproof cameras

Don't let water stop you taking snaps with one of these machines that will take you from the sand to meters deep
Louis van Gaal interview: Manchester United manager discusses tactics and rebuilding after the David Moyes era

Louis van Gaal interview

Manchester United manager discusses tactics and rebuilding after the David Moyes era
Will Gore: The goodwill shown by fans towards Alastair Cook will evaporate rapidly if India win the series

Will Gore: Outside Edge

The goodwill shown by fans towards Alastair Cook will evaporate rapidly if India win the series
The children were playing in the street with toy guns. The air strikes were tragically real

The air strikes were tragically real

The children were playing in the street with toy guns
Boozy, ignorant, intolerant, but very polite – The British, as others see us

Britain as others see us

Boozy, ignorant, intolerant, but very polite
How did our legends really begin?

How did our legends really begin?

Applying the theory of evolution to the world's many mythologies
Watch out: Lambrusco is back on the menu

Lambrusco is back on the menu

Naff Seventies corner-shop staple is this year's Aperol Spritz