03.24.2005
By Anne Minard
ARIZONA DAILY STAR
A University of Arizona researcher is the target of two lawsuits alleging
she lied to members of an American Indian tribe to further her research.
In cases pending in U.S. District Court in Phoenix, the Havasupai Tribe is
suing former Arizona State University professor Therese Markow, who now
directs the UA Center for Insect Science, and her colleagues and employers.
The tribe says Markow and other researchers took blood under the pretense of
helping the Havasupai fight a diabetes epidemic - and later used it to
pursue scientific curiosities about schizophrenia and genetics among tribal
members. Plaintiffs' attorneys say this is the first case they've seen that
examines whether people who give blood, tissue and other bodily materials
have a say in how those materials are used.
Markow has said in statements released through her attorney, Michael Rusing
of Tucson, that she was only trying to understand "the biological
underpinnings of the health issues of the Havasupai." She called the tribe's
allegations "hysterical."
The suits were filed in February and March of 2004 - one by the tribe and
the other by 72 individual tribal members. The lawsuits name Arizona State
University, where Markow and her colleagues initiated the research, along
with the UA, the Arizona Board of Regents and Stanford University, where
Markow enlisted the expertise of other researchers and allegedly sent them
blood samples. Both suits allege ethical violations including breach of
trust, fraud and violation of tribal members' civil rights.
Combined, the suits are asking for $60 million in damages.
"It's cutting-edge because this is something that has not been dealt with,
the ethics of human research," said Albert Flores, attorney for the
individual Havasupai tribal members.
An isolated people
The Havasupai Tribe has its village, called Supai, at the west end of the
Grand Canyon about 100 miles from Kingman. It's a remote village accessible
by an eight-mile hike or horseback ride from the South Rim, or by
helicopter.
The plaintiffs say the Havasupai's isolation makes them vulnerable - and
they say the researchers took advantage of that vulnerability.
In the lawsuits, the tribe alleges that John Martin, an anthropology
researcher who once spent three decades living among the Havasupai, agreed
to study their blood to help understand why diabetes afflicts 45 percent of
the tribe's women and half the men. Martin and a student, Daniel Benyshek,
began making regular visits to the tribe in the early 1990s to collect blood
samples, the suits say.
According to court documents, Martin and Benyshek held several nutrition
classes in 1991 at ASU and at Supai, and published a 1997 study about
Havasupai nutritional habits. The paper, in the Journal of the American
Dietetic Association, reported the diet at Supai is limited to what's
available in a village cafe featuring sandwiches and fried foods and a
convenience store. The researchers drew a link between that and diabetes.
Prized genes
According to a 152-page, 2003 report commissioned by ASU, completed by
independent investigators Stephen Hart and Keith Sobraske and used in the
plaintiffs' case, Martin sought Markow's help early in the process because
he thought her genetics expertise might be able to link Havasupai genes and
diabetes.
But Markow's name never appeared on Martin's and Benyshek's nutrition and
diabetes paper. Instead, she and other colleagues published a 1997 paper in
the journal Tissue Antigens saying Havasupai genes have more in common with
Asian people than with South American tribes. In so doing, the suits allege
Markow and her colleagues implied that Havasupai are descendants of people
who entered the Americas via the Bering Strait after Indians in South
America were already here - which counters the Havasupai belief that human
beings originated in the Grand Canyon.
The tribe says Markow never had permission to use members' blood for the
basic genetic studies. Martin and Benyshek both stated in the ASU report
that the Havasupai would never agree to let their blood be used for studies
of schizophrenia - but the report shows evidence that Markow secured funding
independently, and directed several graduate students in the pursuit of a
link between their genes and what she believed to be a high incidence of
schizophrenia. According to the ASU report, that theory was never validated.
The tribal members involved in both lawsuits say Markow never intended to
help with their diabetes problem and wanted their blood for her own
purposes, which she never made clear.
They're suing Martin and Benyshek because they say that after the men knew
of Markow's intentions, they went along with them. And they're suing ASU,
the UA and the Arizona Board of Regents, which oversees both schools,
because they say the institutions should have better oversight of the ethics
of human research.
Markow's attorney said it's his client who's been harmed.
"I think it's a sad deal, these really top researchers and scientists go out
of their way to help this tribe and now get confronted with all these
overblown allegations," Rusing said. "It's going to have a chilling effect
on research on Native American tribes across the country."
A long battle
Earlier this month, U.S. District Judge Frederick Martone ruled that about
half the allegations in Flores' case with the individual tribal members are
without merit. His ruling gave a green light for the rest of the charges -
including negligence and violation of civil rights - to proceed toward a
trial set to begin in September 2006.
Flores has vowed to revise his complaint so the judge will reinstate the
charge of fraud, which he says is the meat of his case. Meanwhile, Flores
last week asked Martone to move the case back to Coconino County's Superior
Court in Flagstaff, where it started a year ago.
Robert Rosette, the attorney in the Havasupai Tribe case, says that if
Martone invalidates many of his charges like he did in Flores' case, he'll
stick it out at the federal level rather than trying to move his own case to
state court.
He takes particular issue with Martone's interpretation of the law in the
Flores case, where the judge writes that the tribal members' consent for the
blood draws "is not made ineffective even if defendants did make fraudulent
representations to induce that consent."
"I think the judge is wrong, just flat-out wrong on the breach of informed
consent," Rosette said. "I'd be OK to appeal this, based on the law."
Rosette expects to get word today about Martone's ruling with respect to his
case. On Friday, that case is set to be scheduled for trial.