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Havasupai blood case lives on

PHOENIX – The Havasupai Tribe has renewed hopes that a lawsuit it filed against the Arizona State University system will bring justice to its ongoing battle over the use of blood samples that tribal members gave researchers in 1989 for use in a diabetes study. The tribe claims that the samples were collected under false pretenses and used improperly.

The Arizona Court of Appeals in late-November overturned an earlier finding that the Havasupai did not meet legal requirements for filing a lawsuit. Tribal lawyers are now working on entering the discovery phase of the case to get it to trial as soon as possible.

“The case is about creating a precedent to change the way in which scientific entities – whether they’re universities or for-profit pharmaceutical companies – conduct research on indigenous people,” said Robert A. Rosette, a Chippewa-Cree lawyer for the tribe.

“They have to take into account the cultural effects of grabbing this blood and then doing whatever they wanted with it.”

The case, which includes both a suit by the tribe against the researchers and one from individual Indians, centers on circumstances that took place in 1989 when approximately 200 tribal members provided blood samples to scientists from Arizona State University.

Tribal members have said they agreed to have their blood drawn under the pretense that the researchers would only use the blood to help research diabetes in their population, which had been increasing at an alarming rate.

In ensuing years, however – with the help of John F. Martin, a professor emeritus of anthropology at ASU, who initially helped researchers reach out to the tribe – the tribe learned that the samples were used in research on schizophrenia and inbreeding.

The blood samples were also used by at least one doctoral student in a dissertation to support migration hypotheses of the peopling of North America via the Bering Strait Land Bridge.

That use is especially egregious to many tribal members, since their own creation stories indicate that they originated and have always lived in the Grand Canyon and that they did not migrate from Asia via the Bering Strait.

“It’s just sickening when you start to look at some of these facts,” Rosette said.

Martin said that he, too, was sickened when he learned of what he believes to be misuses by colleagues he brought into the diabetes study, including those of Therese Markow, an Arizona State professor of genetics who has since moved to the University of California at San Diego.

Markow, along with the Arizona Board of Regents, is named as a defendant in the case.

In an e-mail, Michael J. Rusing, a lawyer for Markow, said she “complied with all applicable Human Research Guidelines in existence at the time and fully apprised all test subjects of the nature of the Medical Genetic Research Project being undertaken. She directed that each blood donor be required to sign a very broadly worded consent form that specifically advises that ‘the purpose of the research is to study the causes of behavior/medical disorders.’”

Rusing also said Markow “prepared a script that was read to potential donors that states, ‘We are conducting research to try to identify factors that cause some of the health problems experienced by the Havasupai and other Native American peoples. Many of these diseases, such as diabetes, schizophrenia and depression are complicated and so we try to look at as many factors as possible.’”

Whether that script was made available and read to every tribal member in the study is a point of contention for the tribe.

Martin, despite being named in the lawsuit as an accomplice to the misuse, said he does not share the same recollection of all events as that of Markow.

“I found out in 2002 that things were going on that shouldn’t have been,” Martin said. “I felt like hell, of course.”

He ultimately shared his concerns with the university and with tribal leaders.

Martin also said he has received a letter of thanks from the tribe for his whistleblowing effort, and he is hopeful that he will be exonerated in the case. He had been working with the tribe since the 1960s, and had had a strong relationship with many tribal members for more than 40 years. Since the case was filed, he said his relationship has suffered immensely.

The tribe is requesting $50 million in damages, but Rosette said the case is not all about money.

“What this tribe continues to ask for is return of the blood and to give it back properly to the victims it belongs to,” Rosette said.

“We also need some sort of evidence that it’s all of the blood and we need the ability to line it up to the correct victim.”

Anne Titus Hilby, a spokeswoman for the Arizona attorney general’s office, which represents the state university system in the case, said she could not offer comment on the situation, since the litigation is ongoing.

Some researchers who’ve learned about the case said that it could result in a setback to scientific efforts that aim to improve the lives of contemporary Indians.

Markow’s lawyer said his client sits amongst that camp.

“What concerns Professor Markow deeply is that the allegations seem to have resulted in a moratorium on biomedical research on the Havasupai reservation, and perhaps other reservations as well, excluding this and other communities from discoveries with the potential to address their health concerns,” Rusing said.

“It is a bitter irony that, in effect, a group of people who historically has been underserved with respect to health-related research, may now become even more underserved.”

Jonathan Marks, a professor of anthropology at the University of North Carolina at Charlotte and an expert on informed consent and bioethics, said that it seems geneticists have given anthropologists a “black eye” in this situation.

“I think geneticists are being dragged to the point where the rest of us are at,” Marks said. “Anthropologists now tend to be on one side of these ethical questions, and geneticists tend to be on the other.”

Marks added that it’s always reasonable for a tribe to look at the background of a scientist before working with him or her to see what kind of work they’ve involved themselves with and whether they’ve had positive relationships with tribes.

Rosette said that it’s important that all researchers realize that tribal blood is valuable. As such, he said, it is “paramount” that researchers “be very honest with tribes and their people.”

“What this case is trying to do is make it so that Indian governments and their people will not be exploited, and that they will be treated fairly, ethically and above the table,” Rosette said.

“In many ways, it’s to validate the system and to sort of encourage tribal participation in these types of studies that can benefit greater society as a whole.”

Rosette said that tribal leaders are “very focused and resolved” to get the case over with.

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