Wed, Aug 20, 2008

Tucson Region

Havasupai suit over research tossed

By Dan Sorenson
arizona daily star
Tucson, Arizona | Published: 05.04.2007
A suit against the University of Arizona, Arizona State University and researchers claiming they misused blood samples from Havasupai tribal members was dismissed by a Maricopa Superior Court judge, but tribal officials say they intend to refile the suit.
Carletta Tilousi, a plaintiff and Havasupai tribal councilwoman, said the tiny tribe's leaders maintain ASU researchers used blood samples authorized only for the study of diabetes instead for research into schizophrenia, inbreeding and migratory patterns.
Tilousi, 37, said the blood samples and other data collected by two ASU researchers in the early 1990s were distributed to other researchers, including some outside the state university system and possibly to pharmaceutical companies.
Tilousi says neither she nor other members of the tribe received results of any work carried out using the collected blood samples.
When she was an ASU student Tilousi said she learned of a dissertation presentation based on the Havasupai blood samples, but having nothing to do with diabetes research.
Tilousi said use of the samples for research into the Havasupai's origins — the so-called Bering Strait Theory of migration which says American Indians long ago came across a land bridge from Asia — "goes against our religion and our identity."
Among those named in the suit is former ASU research scientist Therese Markow, now a UA Regents Professor of ecology and evolutionary biology with an appointment at the university's multidisciplinary Bio5 Institute.
Diabetes is one of the five targeted diseases in the UA's pairing of its College of Medicine Medical Research Center and the Bio5 Institute's Thomas W. Keating Bioresearch Building.
Bio5 and UA College of Medicine officials were unavailable for comment and Markow declined comment.
As science and technology expands the possible uses for personal biological data, the need for spelling out limitations on its use before collection becomes more important, said Art Caplan, director of the University of Pennsylvania's Center for Bioethics.
"Fifteen years ago, people weren't thinking as much about 'what else could we do?' " with these samples, Caplan said.
He said tribes, as well as any group or individual, clearly have the right to limit the extent to which their tissue samples are used.
Tilousi said a second case, by individual members of the tribe seeking damages for alleged misuse of their samples, is awaiting trial.
● Contact reporter Dan Sorenson at 573-4185 or dsorenson@azstarnet.com