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?"

Start your day with The Independent, sign up for daily news emails
  • Get to the point
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

Recruitment Genius: HGV Fitter - Technician

£16 per hour: Recruitment Genius: This is a fantastic opportunity for someone ...

Recruitment Genius: Automotive Service Advisor - Franchised Main Dealer

£18000 - £25000 per annum: Recruitment Genius: This successful, family owned m...

Ashdown Group: Account Payable Assistant - SW London

£20000 - £25000 per annum: Ashdown Group: Account Payable Assistant - SW Londo...

Recruitment Genius: Bathroom Showroom Customer Service / Sales Assistant

£14560 - £17680 per annum: Recruitment Genius: Even though their premises have...

Day In a Page

Not even the 'putrid throat' could stop the Ross Poldark swoon-fest'

Not even the 'putrid throat' could stop the Ross Poldark swoon-fest'

How a costume drama became a Sunday night staple
Miliband promises no stamp duty for first-time buyers as he pushes Tories on housing

Miliband promises no stamp duty for first-time buyers

Labour leader pushes Tories on housing
Aviation history is littered with grand failures - from the the Bristol Brabazon to Concorde - but what went wrong with the SuperJumbo?

Aviation history is littered with grand failures

But what went wrong with the SuperJumbo?
Fear of Putin, Islamists and immigration is giving rise to a new generation of Soviet-style 'iron curtains' right across Europe

Fortress Europe?

Fear of Putin, Islamists and immigration is giving rise to a new generation of 'iron curtains'
Never mind what you're wearing, it's what you're reclining on

Never mind what you're wearing

It's what you're reclining on that matters
General Election 2015: Chuka Umunna on the benefits of immigration, humility – and his leader Ed Miliband

Chuka Umunna: A virus of racism runs through Ukip

The shadow business secretary on the benefits of immigration, humility – and his leader Ed Miliband
Yemen crisis: This exotic war will soon become Europe's problem

Yemen's exotic war will soon affect Europe

Terrorism and boatloads of desperate migrants will be the outcome of the Saudi air campaign, says Patrick Cockburn
Marginal Streets project aims to document voters in the run-up to the General Election

Marginal Streets project documents voters

Independent photographers Joseph Fox and Orlando Gili are uploading two portraits of constituents to their website for each day of the campaign
Game of Thrones: Visit the real-life kingdom of Westeros to see where violent history ends and telly tourism begins

The real-life kingdom of Westeros

Is there something a little uncomfortable about Game of Thrones shooting in Northern Ireland?
How to survive a social-media mauling, by the tough women of Twitter

How to survive a Twitter mauling

Mary Beard, Caroline Criado-Perez, Louise Mensch, Bunny La Roche and Courtney Barrasford reveal how to trounce the trolls
Gallipoli centenary: At dawn, the young remember the young who perished in one of the First World War's bloodiest battles

At dawn, the young remember the young

A century ago, soldiers of the Empire – many no more than boys – spilt on to Gallipoli’s beaches. On this 100th Anzac Day, there are personal, poetic tributes to their sacrifice
Dissent is slowly building against the billions spent on presidential campaigns – even among politicians themselves

Follow the money as never before

Dissent is slowly building against the billions spent on presidential campaigns – even among politicians themselves, reports Rupert Cornwell
Samuel West interview: The actor and director on austerity, unionisation, and not mentioning his famous parents

Samuel West interview

The actor and director on austerity, unionisation, and not mentioning his famous parents
General Election 2015: Imagine if the leading political parties were fashion labels

Imagine if the leading political parties were fashion labels

Fashion editor, Alexander Fury, on what the leaders' appearances tell us about them
Phumzile Mlambo-Ngcuka: Home can be the unsafest place for women

Phumzile Mlambo-Ngcuka: Home can be the unsafest place for women

The architect of the HeForShe movement and head of UN Women on the world's failure to combat domestic violence