Havasupai Tribe v. Arizona Board of Regents

New Scholarship on the Havasupai DNA Case

June 23, 2010Matthew L.M. Fletcher

Michelle M. Mello and Leslie Wolf will publish “The Havasupai Indian Tribe Case – Lessons for Research Involving Stored Biologic Samples” in the New England Journal of Medicine.

Sadly the paper is unavailable so far.

Here is the abstract:

In April 2010, Arizona State University agreed to pay $700,000 to 41 members of the Havasupai Indian tribe to settle claims that university researchers improperly used tribe members’ blood samples in genetic research. The case illuminates the unresolved controversy over what constitutes adequate informed consent for biospecimens collected for research purposes to be stored and used in future, possibly unrelated studies. This article discusses the ethical issues arising in this area and proposes strategies for addressing them.

NYTs Article on Havasupai Settlement

April 22, 2010Matthew L.M. Fletcher

From the NYTs (slideshow; related article):

SUPAI, Ariz. — 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.”

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Havasupai Press Release on the Arizona State DNA Settlement

April 21, 2010April 21, 2010Matthew L.M. Fletcher

Here (Havasupai ASU Press Release):

FOR IMMEDIATE RELEASE CONTACT (Plaintiffs): Shayna Samuels, 718-541-4785

April 21, 2010 CONTACT (ABOR): Katie Paquet, 602-229-2543

Havasupai Tribe and Arizona Board of Regents Resolve Lawsuit, Announce Future Collaborations

(April 21, 2010 — Phoenix, AZ) – Yesterday the Arizona State Legislature’s Joint Legislative Budget Committee approved a settlement agreement between the Havasupai Tribe and the Arizona Board of Regents resolving litigation involving allegations of unauthorized genetic studies of Havasupai people.

Two decades ago, two former Arizona State University (ASU) researchers collected hundreds of blood samples from Havasupai members, in connection with diabetes research. According to the Havasupai, without their consent or knowledge, the samples also were used in DNA studies that conflicted with Havasupai cultural beliefs, identity and privacy.

Carletta Tilousi, lead Plaintiff and Councilwoman for the Havasupai Tribe said, “We are glad to have come to a resolution with ASU, and hope that this experience helps create better awareness, understanding and cooperation between this institution and our people, and helps us to rebuild what we have lost.”

The Arizona Board of Regents (ABOR) and Arizona State University have formally apologized to the Havasupai people, and the Tribe has acknowledged that great efforts have been made to improve the oversight and conduct of human subject and biomedical research at ASU as a result of the lawsuit.

Key elements of the settlement include return of blood samples to the Havasupai Tribe, monetary compensation to the 41 individual plaintiffs, and collaborations between ABOR and the Havasupai people in areas such as health, education, economic development, and engineering planning. For example, the Havasupai will collaborate with ASU, the largest public research university in the United States, to seek third party funding to build a new health clinic and a high school. Havasupai Tribal Members will also be eligible for scholarships at ASU, the University of Arizona and Northern Arizona University.

Ernest Calderón, President of the Arizona Board of Regents, said that “The Board of Regents has long wanted to remedy the wrong that was done. 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.”

The Havasupai Tribe lives at the base of the Grand Canyon in Arizona, a place reachable by an hours-long hike or mule ride, or in the modern era, a helicopter. Currently the Tribe is composed of about 650 registered members. The remoteness of their location has allowed them to retain a strong cultural identity as well as the native Havasupai language.

“This is much more than a settlement; it is a victory for the Tribe,” said Robert Rosette, Attorney for the Havasupai Tribe. “This is an opportunity to partner with the largest research institution in the United States to create programs which will help the Tribe build a stronger sovereign nation.”

“As we see it, this 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” said Chairwoman Bernadine Jones.

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Congrats to the Havasupai tribe and people, and to their lawyers at Rosette and Associates.

Settlement in Havasupai blood samples lawsuit

April 21, 2010Singel

The New York Times reports that the Havasupai have settled their lawsuit over the misuse of tribal members’ blood samples by ASU researchers for $700,000. ASU has also agreed to return the samples and help build a high school and health clinic for the tribe.

From the New York Times:

http://www.nytimes.com/aponline/2010/04/21/us/AP-US-Havasupai-Lawsuits.html?_r=1&ref=global-home

Arizona Supreme Court to Hear Havasupai DNA Appeal

April 21, 2009Matthew L.M. Fletcher

Unfortunately for the Havasupai Tribe, the Arizona Supreme Court accepted the university’s appeal. Lower court materials are here. From Indianz:

The Arizona Supreme Court on Monday agreed to hear an appeal in the Havasupai Tribe misuse of blood lawsuit.

Tribal members agreed to submit blood samples for diabetes research. But the tribe sued Arizona Board of Regents, Arizona State University and the University of Arizona after discovering the samples were used for studies on migration, inbreeding and mental illness. A judge dismissed the case but the Arizona Court of Appeals revived it last November. One of the parties asked the state Supreme Court to review the decision.

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