Author: Jana Bommersbach
Issue: November, 2008, Page 134
Phoenix Magazine
Aral Putesoy Kaska knows all about the Arizona State University research
project on diabetes.
She remembers the debate among the tribe, the reluctance, the questions of
trust. But in the end, she gave her blood, convinced by her Havasupai Tribal
Council that scientists in Tempe could find answers to stop the disease from
spreading to her daughters and the grandchildren she hoped one day to have.
She also was one of 10 tribal women who studied nutrition at ASU in the
summer of 1990, hoping a better diet could help stem the epidemic that
affects half the women in the tribe and 45 percent of the men - the third
highest diabetes rate in the world.
It never occurred to her - and she wouldn't know for 13 years - that the
blood of an isolated group of Native Americans, among the oldest blood on
the continent, would be considered so rare it would be a "gold mine" to
scientists - not to study diabetes, but to study mental illness, inbreeding
and Indian migration patterns, studies that assaulted both her culture and
her religion. On top of that, she and the tribe discovered they were never
going to get the precious answers they sought, because in all those years,
ASU had not done the genetic diabetic research it promised.
These days, Aral works in the only restaurant in Supai, the Havasupai
village at the bottom of the Grand Canyon that was flooded and evacuated
last summer. Her diabetes is worse than ever. Her daughters have it, and she
expects her grandchildren to get it. Whenever she needs medical help, she
either hikes or helicopters out of the canyon to seek care in Tuba City. She
won't go to the Indian Health Service clinic in the village anymore. That's
where they took vile after vile of her blood.
She explains all this as she sits in her brother's tribal office - Matthew
Putesoy is vice chairman of the tribe - and talks about what became known as
the Medical Genetics Project at Havasupai. Her body language is sometimes
sad - head down, shoulders slumped - and sometimes angry, with her head held
defiantly high, shoulders squared.
If she knew then what she knows now, she says she never would have allowed
them to take her blood. "They lied to me," she says. "I trusted them, and
that was broken."
She's asked what she would tell ASU President Michael Crow or the Arizona
Board of Regents if they were sitting in front of her now. She hesitates for
a long time. "I can't even say it in English," she finally says. It's
suggested she use her native language and let her brother translate.
Here's what she says in Havasupai: "You've hurt us so bad that we feel like
we don't trust anyone anymore. We don't want anything to do with the
university anymore. We hate you all."
As Matthew translates the words into English, Aral's eyes well up, and she
hastily excuses herself before she breaks down. "She's expressing the
sentiment of the tribe," he says as his sister rushes out.
Aral isn't the only one who has cried over this research project, which the
small tribe calls a "severe, gross human rights violation against an entire
Indian community."
It happens even with those you'd never expect, like Dennie Wescogame, a
broad-shouldered, husky man who works with his hands and looks you straight
in the eyes as he talks. He not only gave his blood for the project but
worked in the Supai clinic, helping ASU researchers and students collect
blood from most of the adults in the tribe.
"I wanted to better the tribe," he explains. "Then I found they were using
our blood for all these different things. To me, personally, it was raping
me of my blood. It was using my blood for their own goals. They're taking a
part of my soul away from me. I feel stabbed in the back because I took
blood from my own people for them."
And then the tears come. Most men, when they cry, hide their faces or
furtively wipe away the tears, but 45-year-old Dennie doesn't do any of
that. He continues talking as tears well up in both eyes and trickle down
along the creases of his face. He's not ashamed that he's crying, and it's
obvious this has happened many times before.
"I'm puzzled every day how this can be," he says. "I can't believe they
don't
see what they did to us."
The Havasupai say that what the ASU research project did to them was
"genetic piracy," defrauding and betraying them for personal and
professional gain.
Specifically, they charge:
. They authorized the use of their blood for diabetic research only, and
while some basic, routine testing was done, no significant genetic research
on diabetes ever took place.
. Instead, their blood was used to study schizophrenia and the Bering Strait
theory of Indian migration - a study that basically says Native Americans
aren't natives at all but rather immigrants from Asia who came across a land
bridge.
. Another unauthorized study used their handprints to look for patterns of
inbreeding.
. Although they'd been promised their blood would be kept "under lock and
key" at ASU, it was sent to universities and private labs around the
country.
. Their medical files at the Indian Health Service clinic in Supai were
raided in the dead of night to look for signs of schizophrenia in specific
people.
They say all of this has been disastrous for the tribe. Many tribal members
now are "so distrustful" they refuse to seek any medical or diagnostic care,
says Tribal Chairman Don E. Watahomigie.
"Today we have 20 people on dialysis for their diabetes because they
wouldn't
seek help until it was too late," he adds, noting this wasn't happening in
1990 when the ASU study began. "We're worse off than we were then."
Just as troubling are fears for the tribal members who have died since
giving their blood - they're seen as being doomed and prevented from
traveling to the Spirit World because their blood is lost. (Since filing the
suit, five plaintiffs have died of diabetes-related complications.)
"In our tribe, when someone dies, we bury all their possessions - sometimes
even their favorite horse," says Matthew Putesoy, whose mother died of
complications stemming from diabetes this summer. "That frees them to travel
to the Spirit World and doesn't keep them trapped here. But what do we do
now? If we got their blood back, how would we bury it? We'd have to consult
our elders. We've never had anything like this before."
He adds this issue would never have arisen had the research project gone as
expected, for the blood would have been tested and returned to the tribe
long ago.
The tribe says it was left out of any benefits from its "sacred blood":
Eight graduate students earned advanced degrees because of these blood
samples; about two dozen research papers were published (about 15 of them on
schizophrenia); professors received tens of thousands of dollars in research
grants; and academic careers were greatly advanced. "Everybody benefited
from this except us," Chairman Watahomigie says.
"We so much want to resolve this," says Nancy Tribbensee, general counsel
for the state's university system and a former ASU lawyer who has been
involved in this issue since 1997. Although she says the ongoing lawsuit
prevents her from talking about the merits of the case, she did want to say
this: "We are working very hard to come to a mutual agreement."
Tribal attorneys say it's hard to resolve an issue when one side refuses to
admit it did anything wrong. Tribal attorney Robert Rosette says he's been a
part of mediation meetings in which ASU officials have told him, "There's no
broken bones - you haven't been harmed." He's also heard them say the scant
publicity this case originally received was "all the damage this will bring
us" and, therefore, they were going to contest everything. He says someone
at ASU (he won't say who) has told him the tribe will never get a "red
nickel." And indeed, a March 22, 2004, article on ASU's Web Devil (a
student-driven news Web site) states: "The University disputes the
allegations and will 'vigorously defend itself.'"
The scientist whom the tribe believes is most at fault has dismissed its
claims with one word: "hysterical."
Yet, an independent investigation into this research project - jointly
sponsored by ASU and the tribe and funded by ASU - basically proves every
charge. The Hart Report shows how the project went off track almost
immediately; it documents how strict rules on consent and record-keeping
were ignored; it reveals the voices that tried to alert the university to
the brewing storm; and it unmasks fabrications that could sink important
careers.
It does it with careful language and, at times, sidestepping language, but
the meat of the report - some 400 pages of narrative, including 34
interviews and 319 exhibits, plus about 4,000 pages of attachments - tells a
story that is hard to dispute.
Tribal attorney Robert Lyttle, a former adjunct professor of law at ASU,
says tribal officials weren't initially thrilled that ASU chose Stephen Hart
as its independent investigator. Hart had been executive director of the
Arizona Department of Gaming under former Governor Jane Hull and had
negotiated state compacts on Indian gaming with various tribes. The
government and the tribes were often at odds.
"We weren't surprised he tried to subtlety soft-peddle the report [to
benefit the university], but we were surprised how the professors' stories
contradicted one another, and there's no way you can spin that; no one can
hide that," Lyttle says.
He notes that one of the most devastating documents discovered during the
investigation - a frantic memo to ASU President Michael Crow from the
founder of the Havasupai project, stating, "I believe the charges to be
true" - wasn't even mentioned in the Hart Report, but was found among the
4,000 pages of attachments.
But even given the mountain of evidence and admissions of guilt, this case
hasn't been settled; it's being fought in court. For the past five years,
ASU, the Arizona Board of Regents and the Attorney General's Office have
been embroiled in lawsuits with the Havasupai Tribe and individual members
over what happened with the blood project.
The case already has been through five courts - both state and federal -
although the merits of the actual case have never been argued. The only
issue before these courts has been the assertion by the state agencies that
the Havasupai Tribe shouldn't be allowed to sue because it didn't follow
Arizona's notice-of-claim law.
This law is intended to prevent lawsuits by promoting mediation and
negotiation; the "notice" tells the state what it would take to settle the
case. The law requires notice within 180 days of learning of the injury and
says a dollar amount must be specified. The state contends the tribe filed
its claim "years too late" and originally cited no amount.
Tribal lawyers strongly contest those claims and have taken their arguments
all the way to the Arizona Court of Appeals, where the case currently sits.
"They don't dare face us on the merits of the case," says attorney Lyttle,
"so they're trying to beat us on technicalities."
David Abney of the Arizona Trial Lawyers Association, which has joined the
case as a "friend" of the tribe, agrees. He recently told the Appeals Court,
"There's no doubt that anyone hearing the facts in this case would have
anything but utter contempt for what the government did."
That's not the point, argues the state Attorney General's Office. It told
the court: "It may indeed be sad when claimants lose the chance to have
their case heard on the merits because their attorneys failed to file a
proper notice of claim. But any sympathy is misplaced.." It says the law is
the law, and that's the end of it.
The Havasupai Tribe may never get its day in court. ASU and individual
professors may walk away unscathed. Or someday, a jury may hear all the
evidence in this case. But for the Havasupai, whatever happens in the future
won't change what happened in the past. As longtime Tribal Council member
Agnes Chamberlain says, "This chapter of the tribe's history is written in
blood, and it will never go away."
IT ALL STARTED at a picnic in Supai, the Indian village of 670 people that
sits on one of the most beautiful spots on earth. The housing and public
buildings aren't much to brag about, but the setting is: The stark red walls
of the Grand Canyon form the backdrop of the Havasupai Tribe's capital.
Many tribal members have lived in this village their entire lives and can
trace their ancestry back generations - to the first moment in time,
actually, when their story of creation tells them they emerged from the
earth of the Grand Canyon as the Havasupai people.
So they see it as particularly disturbing to attack their religious beliefs
by suggesting they are a migrating people who came to this continent over
the Bering Strait centuries ago. It also raises a new fear: "They can tell
us, 'You don't belong here, you're not a native here,'" says Tribal Chairman
Watahomigie.
Long before there ever was a Grand Canyon National Park, these people lived
here among its beauty, spending the fall and winter on the plateau, hunting
and gathering, then moving into the canyon for the spring and summer to
plant their gardens.
"When the reservation was created in 1882, the federal government confined
us to the 518 acres at the bottom of the canyon, and we lost almost 90
percent of our aboriginal lands," the tribe's Web site states. The economic
loss was devastating. Their hunting grounds were gone and many were forced
to leave the canyon to become wage laborers - going "up top" they called it.
In 1975, Congress reallocated 185,000 acres of the original hunting grounds
back to the tribe. Today, tourism is its No. 1 industry.
This is a society where the possession of alcohol, drugs and firearms is
illegal. They even discourage machetes on their campgrounds. The people
receive no government stipends, "and we pay income taxes just like all
Americans," the site notes.
The village today has a 24-room lodge, a small café, a post office, a
school, a church, a clinic, a police station and a general store. Visitors
can get there by hiking in, riding a horse or taking the helicopter that
runs a few hours four days a week. And that goes for all supplies, too,
including groceries and all fresh fruits and vegetables.
It was here that a young anthropology student named John Martin decided to
stake his professional career more than 30 years ago. He lived in Supai in
the 1960s, studied the tribe, got to know all the elders, mapped their
complete lineage and earned his doctorate with a thesis on the tribe for the
University of Chicago. "He was our friend," many still say. "We trusted
him."
Trust of outsiders doesn't come easily here, but once it comes, it's
cherished. The tribe seems particularly leery about medical intrusions;
giving their blood would be one of the most discussed and agonizing
decisions they'd ever make. Everyone will tell you they only agreed because
they trusted this white man named John Martin.
By 1989, it was clear diabetes was an epidemic in the village. Elders had
it, younger men and women had it, and now it was showing up in children.
That, probably more than anything, is what prompted the huddle at a summer
picnic, where they asked their friend John Martin if his people at ASU could
help them figure out how to overcome this medical calamity.
"I saw many of my people with this sickness," says Rex Tilousi, who was vice
chairman of the tribe then. "I saw legs amputated and people having to take
shots every day. I went to John and told him my concerns for the future. He
came back and said, 'We can help.'"
Martin, who had been teaching at ASU since 1966, knew this request was a
breakthrough with the tribe, and he thought help could come in two forms:
genetic research and nutrition education. He went back to ASU in the summer
of 1989 looking for the best experts he could find.
For the nutrition aspect of the study, Martin approached ASU professor Linda
Vaughan, who eagerly joined the project. Vaughan would tell Hart she knew
this to be a "diabetes only" project.
Then Martin went looking for a human geneticist, and he didn't have to
search hard. At the time, ASU's genetic research was mostly done on animals;
very little work was being performed on humans. The entire university had
only one human geneticist, but she was already a true star in getting
research grants. Therese Markow, a biology professor with an interest in
schizophrenia, welcomed Martin's invitation. She told him she would like to
expand the research to also test for schizophrenia.
The Hart Report explains what happened next:
"Martin told Markow that in all likelihood the Havasupai Tribe would not be
interested in a study on schizophrenia. He told Markow, instead, that the
Havasupai were terrified about the present and future effects of diabetes
and that if they started work on diabetes, they might be able to broaden the
scope of the project later.
"There is no question in Dr. Martin's mind that this project was all about
diabetes, although at times Markow pushed for possible (future) work on
schizophrenia.. Martin thought that Markow eventually 'pulled back' on the
idea of studying schizophrenia among the Havasupai."
Vaughan also says she understood that Markow's interest in schizophrenia
research "never got off the ground." But it did. Almost immediately, in
September 1989, Markow applied for a grant from the National Alliance for
Research on Schizophrenia and Depression to study schizophrenia in the
Havasupai people. They awarded her $92,880, according to the Hart Report.
The blood draws began in July 1990, when graduate student Kevin Zuerlein was
sent to Supai. That summer, he collected blood from about 100 tribal
members - those most committed to the project. At least, that was his day
job. At night, when everyone had gone home, he searched through medical
records in the Indian Health Service clinic, looking for signs of
schizophrenia in specific tribal members from a list Markow had given him.
He told the Hart investigators he had a "mandate" from Markow to search for
schizophrenia and was under the impression she had "permission" for these
clandestine record searches.
But the Hart Report quotes four officials of the Indian Health Service, all
saying there was "no way" anyone would have authorized such an invasion of
privacy.
David Morgan, who oversaw medical services for the IHS at the time, says if
anyone had ever asked for such a review - and no one ever did - it would
have been a "major event" and could only have happened if approved by both
the Tribal Council and individual tribal members. He says that approval
would never have been given, noting mental health issues are "very
sensitive" with the tribe.
About the same time Zuerlein was secretly going through medical records, ASU
was hosting eight young women from the tribe for a summer program on campus
that taught them about nutrition and exercise and their relationship to
diabetes. Markow had helped get the grant to pay for the summer program. By
the end of the summer in 1990, the ASU News Bureau was touting the Havasupai
diabetes project in a news release. Martin could boast to the tribe that ASU
President Lattie Coor was so impressed with the project he had made it one
of the university's "top five priorities." As far as the public knew, this
project was about diabetes only.
In fact, Hart would find the only ones who didn't believe this project
focused entirely on diabetes were Markow and Zuerlein, who thought of this
as "Dr. Markow's project on schizophrenia which had a diabetes component."
But even then, Zuerlein said he never heard schizophrenia mentioned by
members of the tribe or at the Tribal Council meetings he attended; he only
heard the project referring to diabetes.
Markow, whose academic star kept rising, moved to the University of Arizona
in 1999 as the Regents professor of ecology and evolutionary biology. That's
where she was interviewed on August 15, 2003, by Stephen Hart and his
associate, Keith Sobraske. (Markow has since transferred to the University
of California at San Diego.)
The investigators showed Markow several exhibits, including a grant
application that clearly referred to the project as "the Havasupai Diabetes
Project." "According to Dr. Markow, the diabetes project fell under the
umbrella of the 'medical/genetics' project, and as far as she was concerned,
this covered any and all diseases affecting the Havasupai Tribe."
Investigators underlined that contention since it so contradicted what
everyone else was telling them - that this was only a diabetes study. That
was the understanding of Martin, who had brought the project to ASU and felt
so honored by the tribe's trust he told colleagues that he and ASU had a
"covenant" with the tribe. That was the understanding of Vaughan, the
nutritionist, and of James Collins, Markow's department head and the head of
ASU's biology department at the time. It also was the understanding of
officials at the Indian Health Service, some of whom came to ASU for a
luncheon early in the project to hear it described as studying only
diabetes. Graduate students also knew this project to be focused on diabetes
only, and the only one who knew differently says Markow told him to lie
about it to the tribe. And there was no question the entire Havasupai Nation
believed it was giving its blood to study diabetes, period.
Markow maintains to this day that she had permission to test for things
other than diabetes and that her "proof" is the consent forms signed by some
of the Havasupai who donated blood. She insists the project had two focuses:
diabetes and schizophrenia.
But the Hart Report would conclude this: "Considering the totality of the
circumstances, it is most likely that the donors understood this to be a
diabetes project only."
Hart further found that Markow's account of events differed from others on
almost every major point.
For instance, she was asked for the sacrosanct lab notebooks that showed the
scope of the work, the identity of the donors and where samples had been
sent. This crucial documentation is part of any research project. Markow
said her former lab director, Chris Armstrong, had taken them. But the
investigators already had learned that Armstrong denied ever taking the lab
books. Keith Coon, another graduate student, backed him up by saying he used
those lab books after Armstrong already had left ASU. Markow later would say
she found the lab books but then lost them again. The lab books have never
materialized.
They asked her about consent forms - the bedrock of human research - and she
said she had 105 consent forms in a file. But as investigators probed, she
admitted all those forms were from 1990. When asked what happened to the
consent forms for blood draws taken between 1991 and 1994, Markow said her
"best guess" was that they were "lost by the moving company" that packed her
up when she left ASU to join UofA.
But investigators already knew that wasn't true.
They'd been told there never were any consent forms from 1991 to 1994 - by
the student who actually had done the blood draws.
Daniel Benyshek was a master's student in anthropology and new to research
when he went to Supai to draw blood in 1991. He told investigators that, by
now, all the participating tribal members already had given blood, and he
found the remaining members reluctant because they'd "gotten taken in the
past." He admitted he never had tribal members sign a form, although he read
them a "consent script" that told them their blood was being drawn to
"exclusively" test for diabetes. (Markow says she'd never seen that script
before and "it was contrary to what she understood was taking place," the
investigators note.)
Benyshek, who considered Martin his mentor, says he was told "the only way
to do business with the Havasupai was on trust," and he found that to be
true. He says he never had any inkling the blood he was drawing would be
used for anything but diabetes research. And he fondly remembers the tribal
members he got to know so well. They remember him well, too. To his face
they called him the "tall man." Behind his back they jokingly referred to
him as "Dracula."
Benyshek says about every other Friday he'd helicopter out of Supai with a
cooler full of blood samples headed to ASU. When he got to Seligman, he'd
call ahead to give his arrival time, and he'd deliver the blood to Markow's
lab. He says no one ever asked him where the consent forms were, so he
thought they weren't a big deal.
Now with a doctorate in anthropology, Benyshek is an assistant professor at
an out-of-state university. The Hart Report clearly favors Benyshek's
version of events over Markow's, stating, "One doubts whether Dr. Benyshek
would have any hidden motive to not tell the truth about the course of
action he took with the Havasupai in 1991-1994, and if so, what that
motivation might be, given that he is readily admitting a significant
error," the report notes.
The consent forms that do exist pose other problems for this project.
There's
both a "script" and an actual form that was signed by those giving blood in
1990. The verbal script says that blood would be used to screen for genes
"related to diabetes, schizophrenia and depression." But the written consent
form states blood would be used for "behavior/medical problems," which is
far less specific.
Markow's former lab assistant, Chris Armstrong, told the Hart investigators
that Markow had anticipated problems with the consent form. "She indicated
that the language was broad enough in the consent forms that she would be
'untouchable' if the tribe objected," the report states.
Markow's attorney, Mick Rusing, gave PHOENIX magazine copies of the script
and written consent form, indicating they were proof enough that his client
had permission to do whatever research she wanted. However, the Hart Report
found official after official who kept insisting one form - or one verbal
message - wasn't enough.
One of the strongest voices on this subject was the man who was Markow's
biology department chairman at the time. James P. Collins told Hart that,
"informed consent consisted of the totality of the information imparted. and
not individual components, such as an informed consent document."
Furthermore, Collins said, the "ultimate decision" about changing or
expanding research lies with the donor, not the scientist.
Additionally, the Hart Report chronicles how ASU scientists handled the
rules and regulations that govern human research. And although the report
tried to sidestep the issue, saying its intent was not to analyze whether
rules were broken or not, the narrative lays out a path that shows federal
regulations, demands of granting groups and ASU's own protocols weren't
respected.
Human research is governed by books of rules for obvious reasons.
Universities that undertake human research with grants from national
institutes and the federal government must attest that they're following
regulations. Internally, that job is done by ASU's Institutional Review
Board (IRB), which is "delegated the task of approving research projects
involving human subjects," the Hart Report notes. "The IRB must ensure that
when some or all the subjects are likely to be vulnerable to coercion or
undue influence, such as economically or educationally disadvantaged
persons, additional safeguards have been included in the study to protect
the rights and welfare of these subjects." The Havasupai people clearly fell
into this "vulnerable" category.
While there are dozens of points along the way when the IRB appears to have
been little more than a rubber stamp for Markow, a few notes in the Hart
Report stand out:
. Markow never sought IRB approval for the Havasupai project until January
18, 1991 - six months after blood had already been collected from at least
100 tribal members.
. The IRB appears ignorant to the claim that no consent forms were collected
from 1991 to 1994 until well after the tribe discovered what was really
happening.
. There was no IRB application or approval for at least three graduate
student projects that used the Havasupai blood.
. There was no IRB approval for an inbreeding study conducted by Martin.
IRB officials told the Hart investigators in August 2003 that they were in
the process of "significantly" revising their process of overseeing human
research.
CHRIS ARMSTRONG WAS A graduate student when the Havasupai project began in
1990, and he said that, from the very start, professor Markow told him to
conceal he was studying schizophrenia. He kept quiet, he said, because this
was his field of study, and he felt Markow had a "gold mine" for
schizophrenia research with her access to Havasupai blood.
He said Markow told him the tribe had a 7 percent incidence of the mental
illness, and he planned his dissertation around a study of their blood to
see if it showed a genetic explanation for the disease.
Armstrong kept a diary during his college years - years also marked by abuse
of alcohol and drugs - and he shared the diary with Stephen Hart during the
internal investigation.
The diary notes that in late summer of 1990, as he prepared to go to Supai,
Markow told him not to talk about schizophrenia with the tribal members. A
couple years later, he says he lied directly to Tribal Vice Chairman Rex
Tilousi during a visit to the ASU lab. He contended he was "instructed" not
to tell Tilousi he was working on schizophrenia but to tell him he was
studying diabetes.
"When he asked Markow for an explanation, Markow indicated that telling
Tilousi that he was working on schizophrenia would 'scare' the Havasupai and
would threaten the future use of DNA from the Havasupai in other research
projects," the Hart Report says.
Markow "strenuously" denied the subterfuge. She said they were not studying
the mental illness at the time but acknowledged to Hart that she "instructed
Chris that it was premature for him to discuss such a study with members of
the population." Armstrong countered that he was well into his dissertation
research at this point, and he felt "shame" that he had lied to Tilousi.
Eventually, Armstrong found he could not establish the Havasupai link to
schizophrenia that he was looking for and said Markow couldn't verify the 7
percent claim; it turns out the claim is unfounded. He ended up shifting the
focus of his research and received his doctorate in 1996.
By then, Armstrong had become concerned that there were bioethics problems
with the Havasupai blood project. In particular, Markow's former lab
director worried that Markow did not have the proper "informed consent" for
any research beyond diabetes. He wrote to her about his concerns, but she
never answered him. He eventually decided to bring the issue to the
attention of ASU officials. "He acknowledged that he had two motives: first
to correct the situation, and second, he was upset with Markow," the Hart
Report notes. "He was angry and frustrated that he could not complete work
on schizophrenia, despite the fact that Markow had made a number of promises
about all the work that Armstrong would be able to do on schizophrenia with
the Havasupai Tribe."
Armstrong then wrote letters to the ASU professors whose bioethics courses
he had taken, including the vice president for research and the chairs of
the biology and philosophy departments.
Armstrong told the Hart investigators that he knew he was jeopardizing his
career with these letters, because he knew he'd no longer get favorable
referrals from his adviser, Markow. He eventually heard back from Nancy
Tribbensee, then a legal adviser to the university and now the legal adviser
to the state's entire university system. She told Armstrong his charges were
"unfounded."
Armstrong says he thought of taking his concerns to the tribe but ultimately
decided against it. But he did fire off an angry e-mail with a veiled
threat, noting that if the tribe, the media and the National Institutes of
Health knew about these problems, they'd have "a field day getting to the
bottom of these issues."
Markow's attorney, Mick Rusing, doesn't put much faith in either the
findings of the Hart Report or Chris Armstrong's veracity. He calls the
report "a bogus, put-up job" and says he can't believe they'd take the word
of someone like Chris Armstrong over a nationally honored scientist like
Markow. He calls Armstrong "a flake," claiming "he has a vendetta against
the school and professor" and can't be trusted because of a history of
alcohol and drug abuse. (Indeed, the Hart Report goes into considerable
detail of Armstrong's abuse problems, including his 1999 felony conviction
of distributing cocaine, which brought a 37-month sentence he completed in
April 2002.)
Markow told PHOENIX magazine she only wanted to speak through her attorney,
just as she told the Arizona Daily Star in 2005. Through her attorney, she
told the Star that she was only trying to understand "the biological
underpinnings of the health issues of the Havasupai." The paper quoted her
as calling the tribe's allegations "hysterical."
Armstrong wasn't the only one who'd blow the whistle on this research
project. So would the man who founded the project, John Martin. But that
would come long after most of the damage already had been done.
NOBODY UNDERSTOOD HOW BAD THINGS WERE until early 2003.
By then, a lot of things had changed at Arizona State University. Lattie
Coor (who did not return calls for comment on this story) had retired and
been replaced by the brilliant, bold and ambitious Michael Crow. Martin was
pleased that President Crow adopted an "Indian initiative" and wanted ASU to
be "the place to go for North American Indian studies."
Crow also wanted ASU to become a "new American university" and pegged a lot
of hopes on a future filled with biogenetic research. Becoming a major
research university is a bragging right in the academic world, and Crow went
after the idea vigorously.
So Martin was particularly upset when he learned in early 2003 that a
graduate student named Dan Garrigan had used Havasupai blood samples for a
doctoral dissertation on migration patterns that had nothing to do with
diabetes and also, without permission, had used Martin's own lineage studies
of the tribe.
What this meant is that one of ASU's first human research projects had gone
awry, and the implications could threaten relations with the entire Indian
community.
Martin alerted top ASU officials that there was a problem brewing with this
dissertation and that there had been no "informed consent" for this
research. Then he invited an old friend from Supai to attend the
dissertation presentation. It was March 4, 2003, and for an entire tribe,
the world was about to change.
CARLETTA TILOUSI GREW up in Supai and has known John Martin since she was a
child. "John allowed me to drive his car so I could get a license," she
remembers. "That's how close he was to my family."
When the Havasupai project began, it was Martin's closeness to the tribe -
"he knew a lot of our stories and a lot of the ancestors" - that convinced
members this was legitimate. After all, she remembers, it would be the first
time the tribe had ever allowed its blood to be taken for a research
project.
Carletta was finishing high school, and she thought the study sounded so
good because the diabetes problem was so bad. "I'm dying, they're dying,
let's
do it," she remembers thinking.
After high school, she traveled the world for several years and worked for
the United Nations on environmental and justice issues.
"I experienced different cultures and societies and languages, and that's
what made me go to college," she says. She knew she'd be one of the few
tribal members to ever earn a college diploma. She chose ASU and was getting
a bachelor's degree in justice studies in 2003 when Martin invited her to
the dissertation presentation.
She remembers sitting in the back of the room with Martin and "Dracula"
(Benyshek had flown in from Las Vegas for this presentation). In the front
of the room, on the dissertation panel, sat Markow.
As she listened to Dan Garrigan defend his research on Native American
migration patterns, Carletta heard him make reference to 18 blood samples
from the Havasupai Tribe, "and I thought, oh my God," she remembers. "And
I'm
getting angrier and angrier. I get nervous when I talk in front of people,
but I raised my hand and I asked, 'Did you get proper consent from the tribe
to do this research?' The whole room looked at me."
She remembers Garrigan became flustered, admitted he didn't have permission,
and then someone quickly adjourned the panel.
"John Martin turned to me and said, 'Bullets are going to fly.'"
She remembers an ASU dean rushing up to her, saying he wanted to talk. "He
ushered me into another room" with all the professors, and "everyone was
yelling at each other."
She says she will always remember seeing Markow reaching her arms up as far
as they would go, declaring, "I have consent forms this high."
"The dean asked, 'What could we do to remedy this?'" Carletta remembers.
"That was the first and last time they asked that question."
She went home to her husband, attorney Robert Lyttle, whose entire law
practice focuses on Native American claims. They found the situation to be
unbelievable. Then she called Tribal Chairman Watahomigie to tell him what
she'd learned. She remembers the sad trip home, when she went "door to door"
to explain to each person what had happened. There also was a meeting
attended by most of the tribe, during which they confronted Martin and
Benyshek. Martin laid all the blame on Markow, characterizing her as
"arrogant and reckless." He contended she "controlled the funds, controlled
the knowledge and controlled the raw materials."
But the answers were skimpy and spotty, and Carletta looks back and realizes
they didn't have any idea yet how big the problem was or what had happened
with their blood samples. But they knew enough to know ASU hadn't been
honest with them.
As attorney Rosette puts it: "This was like taking their land. Now they're
taking a part of them that's worth billions in research, but who in this
tribe would know that?"
On May 8, 2003, in a special Tribal Council meeting, the Havasupai Tribe
approved a "Banishment Order" that barred ASU, its professors and employees
from the reservation forever. The order was the first of its kind and
states: "The Havasupai Tribe has demanded that ASU disclose to the Tribe all
of its actions regarding Havasupai blood and stop all unauthorized
experimentation on Havasupai blood, but ASU has failed to disclose to the
Tribe any information about where ASU distributed the blood and the purposes
for all research."
Three days later, Martin sent an "urgent" memorandum to the highest
officials at ASU, starting with Michael Crow. It is a devastating memo that
warns the tribe has planned a news conference for May 14 to publicly make
its charges that their blood was misused and transferred to other
universities, all without their knowledge or consent. "I believe the charges
to be true," Martin added.
The two-page, single-spaced memo then lays out the history of the research
project and the problems already known - information he warned would
"seriously embarrass ASU." (To read more about the desperate memo, scroll
down to the end of this story.)
Martin begged Crow to pick up the phone and call the Tribal Chairman to
personally settle this dispute, suggesting ASU's apology and promise to
return all the blood would satisfy the tribe and "could end this."
It is not known what Crow said or did when he read the memo (Crow's office
did not return calls from PHOENIX magazine for this story), but what
happened next suggests he demanded immediate action. ASU was finally paying
attention, and efforts were quick to stop a news conference that could have
meant far-reaching damages to ASU's hopes of becoming a major player in the
world of genetic research.
Two days after Martin's shocking memo and one day before the tribe's planned
press conference, the Havasupai Tribe received a fax from the university's
legal office saying it was prepared to fund "an external authority to
investigate what had happened." The tribe agreed to call off its news
conference to wait for the results of the study. That's when attorney
Stephen Hart was hired to head the investigation. Along with private
investigator Sobraske, he immediately set about interviewing those involved
and gathering documents.
He gave a preliminary report on September 5, 2003, revealing that the
tribe's
fears were justified. Three days later, the tribe sent a notice of claim to
Arizona Attorney General Terry Goddard, alerting the state that a lawsuit
against one of its universities was coming. (This alert did not include the
required dollar amount for such a notice. It was amended on March 5, 2004,
by new tribal attorney Robert Rosette, specifying the tribe was seeking $50
million in damages.)
The final Hart Report was revealed in December 2003 in a face-to-face
meeting in Flagstaff with ASU and tribal officials. Carletta remembers that
Hart spent 45 minutes summarizing what he found, "and as the story gets
worse and worse and worse, the Havasupai in the room are weeping," she
remembers. "A couple of the ASU officials were crying, too."
Tribal attorney Rosette believes if they ever go before a jury, the Hart
Report alone would make it see all the harm done to the Havasupai.
"They're pulling every trick to keep us from getting to trial because they
know if we go to trial, they're sitting ducks," he contends. "There's a
terrific fear of the truth coming out in front of a jury."
Phoenix attorney Albert Flores, who represents individual tribal members,
says, "A jury would see this was out-and-out fraud."
After the Hart Report came out, the tribe finally understood exactly what
had happened to them and how it had happened. They learned, for the first
time, that during the blood draws, ASU personnel also took "handprints" that
were used to study inbreeding - another study they never consented to.
They learned their blood had been sent for experiments to five scientists at
private labs, as well as to Stanford University and the University of
California at Berkeley.
They learned about the confessions of students who knew something was wrong,
and how Chris Armstrong had tried back in 1997 - six years earlier - to
alert ASU to a problem.
But Markow's attorney, Mick Rusing, maintains the Hart Report is "biased"
and presents "wild-eyed conclusions."
On March 12, 2004, Carletta, joined by about 50 other tribal members, filed
a formal complaint in Coconino County Superior Court in Flagstaff, claiming
ASU researchers had committed "atrocious and utterly intolerable" breaches
that "went beyond possible bounds of decency."
Her husband was one of the attorneys filing the case. They originally asked
for $45,000 in damages for each member. That number has since become a lump
sum of $10 million. The tribe soon followed with its own lawsuit, seeking
$50 million. It sued the university and the Board of Regents, along with
Markow, Benyshek and Martin.
Martin makes it clear in a long e-mail to PHOENIX magazine that he thinks
it's
unfair he has been included in the suit, since he was one of those trying to
expose the problem.
He calls the actions of the university, Markow and Carletta Tilousi
"contemptible," and says, "The tragedy here is that this sordid, expensive
affair might have been avoided had ASU dealt with it honestly in the
beginning."
But, he adds, all that is "trivial" compared to the damage done to
discovering the real causes of diabetes in the tribe, which now is
"impossible" because of broken trust and lawsuits.
Since then, the legal game has played out like a ping-pong match: The
Arizona Board of Regents asked that the cases be moved to federal court, and
the federal court dismissed the tribal members' claims.
The members then went back to state court in Coconino County but were
transferred to Maricopa County where, on April 30, 2007, Judge Janet E.
Barton dismissed their claims. She said they hadn't given the state enough
information to support their damage amount - a standard that comes from a
2007 court ruling but which she applied retroactively to this 2003 case.
This past June, the tribe and Tilousi asked the Arizona Court of Appeals to
overturn that ruling.
THE COURT SYSTEM may not have looked seriously at the Havasupai's claims,
but many other Native American tribes across the nation have - including
every tribe in Arizona.
On March 21, 2006, the nation's largest tribe, the Navajo Nation, issued the
first volley in what would be an avalanche of disgust from throughout Indian
Country. The Navajo's letter went to ASU provost Milton Glick, urging the
university to "properly address the egregious violations of human subject
research protocols and ethics committed against the Havasupai Nation.."
Beverly Becenti-Pigman, chair of the Navajo Health and Human Resources
Review Board, says it was not only upset by what had happened but by how ASU
was handling the issue. She says it appeared ASU was claiming it "can
violate. Federal Regulations [to protect human research subjects] and the
victims and the tribe would have no legal remedy.. We understand that ASU
has also argued that once a biological specimen, such as a blood sample, is
obtained from a human research subject, even if the specimen was obtained by
fraud, that the human research subject loses all property rights to the
specimen, and that ASU researchers are at liberty to use the specimen as
they see fit."
That letter was quickly followed on March 24, 2006, by a resolution from the
Inter Tribal Council of Arizona, which represents all of the state's tribes
except the Navajo. It supports the Havasupai efforts "to protect its members
against unauthorized research on their blood" and "condemns all unauthorized
genetic research on Native American Indian Tribes." It also calls directly
on Governor Janet Napolitano, who is a member of the Arizona Board of
Regents, to "ensure that the Havasupai's claims are addressed promptly and
appropriately."
On July 15, 2006, the National Indian Gaming Association - representing 184
American Indian Nations - delivered a check to the Havasupai Tribe to
support its litigation. That October, the National Congress of American
Indians, the oldest and largest association of tribes, passed a resolution
at its convention in Sacramento, California, that "admonishes Arizona State
University and the State of Arizona for the apparent fraud on the Havasupai
Indian Tribe."
Individual tribes also passed resolutions throughout 2006 supporting the
Havasupai, including the Salt River Pima-Maricopa Indian Community, the Gila
River Indian Community, the Ak-Chin Indian Community, the Colorado River
Tribal Council, and the Apache, Paiute, Ute, Fort Mojave, Hualapai, Cocopah
and Tohono O'Odham tribes.
That wouldn't be the end of it. On May 30, 2008, the Inter Tribal Council of
Arizona again called on Governor Napolitano to act.
"We are informed the state continues to raise technical defenses to prolong
litigation against the Havasupai, rather than work in good faith to settle
its claims," states the letter, signed by council president Shan Lewis, who
is also vice chairman of the Fort Mojave Indian Tribe. "It is disheartening
to Tribes in Arizona, which have generously contributed to Arizona's
universities in recent years, that after two years there is still no
resolution to this matter."
The governor's office did not return PHOENIX magazine's calls for comment on
this story.
THE ARIZONA COURT OF APPEALS sits in a grand, beautiful building on west
Washington Street, and it is here that the Havasupai Tribe hopes to get its
day in court. But it's also the place where the State of Arizona, the
Arizona Board of Regents, Arizona State University and several professors -
including Martin and Markow - hope to see this nightmare end.
For more than two hours on June 11, 2008, all sides of this argument came
together in the same room to duke it out - not over the merits of the case
but whether the tribe should be allowed to ever get in front of a jury.
The state's case is that the tribe waited far too long to file any notice of
claim, and when it did, it didn't follow the law. So, according to the
state, even if it is unfortunate, the tribe and individual members shouldn't
be allowed to sue. It's crucial to determine when the tribe knew it had been
damaged, since there's a 180-day limit on giving notice to sue.
The state contends the tribe first knew studies on schizophrenia were being
conducted because of a letter Martin sent them on April 29, 1997, and
therefore, not sending a notice of claim until September 2003 was "years too
late." But tribal attorneys say this is absurd. The letter can be read a
hundred times, they contend, and you'd never see it as "disclosing"
anything. In fact, the letter seems to reassure the tribe there was no
unauthorized testing going on.
If that wasn't the date of discovery, the state offers several other
options. Certainly, they say, the banishment order on May 8, 2003, must
count. Tribal attorneys argue instead that everything was put on "hold" to
allow the completion of the Hart Report and, therefore, the magic countdown
of 180 days began after the preliminary report was presented on September 5,
2003.
Appeals Court Vice Chief Ann A. Scott Timmer told the state's attorneys this
"seems like a real Catch-22 here." She acknowledges that the banishment
order shows they knew of some damage, but she wonders if they knew the
"extent" of their damages, and wonders if they really were required to make
a settlement demand before they knew "the bulk of the facts."
Assistant Attorney General Attorney Daniel P. Schaack told the court if they
truly could not determine damages "they could have entered into
negotiations." But tribal attorneys and members of the Tribal Council say
that's exactly what they tried to do.
"All we originally asked for was an apology and a return of the blood
samples so we could resolve this without court," Tribal Chairman Watahomigie
says. "But ASU said they were going to court."
However, the university system's general counsel, Nancy Tribbensee, insists
ASU "did apologize and has repeatedly offered to give back" what's left of
the blood. "ASU went to considerable effort to collect the blood that still
exists, but the tribe refused to accept it," she says. "We would be most
interested in working with individuals and the tribe at any time to return
[the blood]." She stresses this point: "Regardless of what happens in court,
ASU is committed to resolve this in a mutually agreeable manner."
Chairman Watahomigie says he's never heard anything close to an apology, and
the blood that's been offered is unmarked and unnamed - it could be any
blood. "We don't trust them anymore," he says. "Now it's too late to
settle."
There was an offer from the Arizona Board of Regents, he says: 10 computers,
two printers and a scholarship program for nutrition or health-related
studies. He says he can't imagine a Havasupai ever attending ASU again and
says the offer was "not worth responding to."
"I think because we're a small tribe and isolated, they didn't think we'd do
what we're doing," says Tribal Council member Coleen Kaska. "They thought
we'd
give up and go away. But we stood up. As small as we are, we'll keep
fighting."
The council notes it was warned that if this issue went to court, it would
take many years (read: many dollars). But if anyone thought that would scare
them off, it shows a fundamental ignorance about the Indian mind set. Time
is different here. They don't measure it in hours and days, they measure it
in generations and, in this case, in terms of honor. "Even if we don't win,
I believe we already have won for the tribe, because we stood up to them and
said, 'What you did was wrong,'" Kaska says.
She and a dozen other tribal members came to Phoenix from Supai to attend
the Appeals Court hearing. She listened to tribal attorney Brendan Ludwick
ask the court, "How do you put a dollar amount on a severe, gross human
rights violation against an entire Indian community?" He says the harm to
the tribe was clearly laid out in the university's own Hart Report.
"The state had a wealth of information through the Hart Report - more than
most claims could dream of," he argued.
And there were new voices in court that day on behalf of the Havasupai: The
Arizona Trial Lawyers Association Inc. has signed on as a friend of the case
and is viewed as a powerful ally. Attorney David Abney told the court the
state was playing games with the notice-of-claim law, pretending it didn't
know how to evaluate the extent of damages to determine if the $50 million
request - an amount Abney called "modest" - was proper. "What more did they
need?" he asked, incredulously. (Later, Judge Timmer asked the same question
of the state's attorneys.)
At press time, the Court of Appeals had not issued its ruling on this case.
Regardless of the decision, it is expected the losing side will appeal to
the Arizona Supreme Court. So this case could still be years away from ever
seeing a courtroom - if it does. But one thing is clear: The Havasupai Tribe
will never be the same again.
Carletta Tilousi tears up as she speaks about the "pain of betrayal" and
says she hopes her tribe's fight will change the research process so
scientists are "more respectful of human beings."
That's not what happened here, she says: "It shouldn't have been, 'They're
just dumb Indians who don't understand,' but that's what it was. We're going
to fight this to the end."
The Desperate Letter
Exclusive to PHOENIX magazine online, here is the memo ASU President Michael
Crow received from the scientist who initiated the Havasupai blood project.
If ever a memorandum stopped hearts, it had to be the one marked "urgent" on
May 11, 2003, from Arizona State University anthropology professor John
Martin.
It went right to the top, addressed to President Michael Crow, Provost
Milton Glick and David Young, dean of the College of Liberal Arts and
Sciences.
The "RE:" line would have taken anyone's breath away: "Havasupai Tribe
Press Conference on ASU Researchers' Misuse of Havasupai Blood/DNA."
Martin wrote:
"Their airing in public will seriously embarrass ASU, worsen the already
tense, almost hostile relationship between genetic researchers and Indian
tribes, and make all and especially biomedical work with Indians more
difficult," he wrote.
Already, Martin noted, the Havasupai had closed the reservation to ASU and
ended a research project that had been ongoing for 13 years.
Martin added it was because he was so "trusted" by the tribe that he was
approached to help them with their "diabetes epidemic" in 1989 and therefore
brought this project to ASU. "The Havasupai enthusiastically endorsed
genetic research on diabetes," he wrote. "Almost the entire adult population
volunteered blood because they believed it would be used for that purpose.
Yet no genetic research on diabetes genes was undertaken."
Instead, he wrote, the blood was used to do studies on schizophrenia and
migration patterns and, furthermore, was distributed to other research
laboratories, such as the University of Arizona, Stanford and Berkeley.
"None of these researchers was known to the Havasupai," Martin wrote. "Their
blood was thus used and transferred to other researchers without their
consent."
Martin warned that tribal attorneys felt "ASU was stonewalling." He
suggested it would "take the immediate personal intervention of President
Crow" to stop the news conference that so frightened him. He was so bold as
to provide phone numbers and suggest "President Crow should pick up the
telephone and call both the tribal attorney. and chair of the Havasupai
Tribal Council to ask for a postponement and the opportunity to personally
hear the tribe's complaints and address them himself."
Martin still held hope that this problem could be resolved. He wrote, "In my
view an apology for any errors, mistakes or oversights by ASU and help in
getting the blood/DNA repatriated could end this and even provide the basis
for President Crow to use these events to advance his Indian and genetic
initiatives."
Instead, the issue ended up in court. The lawsuits between ASU, the Arizona
Board of Regents and the Havasupai tribe are now five years old.
- Jana Bommersbach
Link to article (w/photos):
http://www.phoenixmag.com/lifestyle/200811/arizona-s-broken-arrow/