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August 15, 2013 | Posted By Hayley Dittus-Doria

Twenty-three years ago, Arizona State University geneticist Teri Markow collected samples of blood from the Havasupai Indians, who live in a remote corner of the Grand Canyon. She was looking for genetic markers of diabetes, but instead, used the DNA in the blood to study schizophrenia — or so the story goes.

In 2003, the Havasupai sued ASU and Dr. Markow.

The Havasupai Indian case, a standard in bioethics circles on
how not to handle DNA testing, is built on a house of cards.

But it never happened. Dr. Markow never probed the DNA for anything other than standard, generic markers. So how did she wind up the tarnished target of a classic case study in bioethics?

The story — reported in the popular press, the feature sections of science journals, and in the bioethics and legal literature — understandably inflamed Native Americans. Markow was vilified. But consulting primary sources reveals striking holes in the widely-accepted narrative.

When I re-read the reports on the Havasupai for last week’s DNA Science blog post, I suspected something was fishy, for a few reasons.

  1. Journalists rarely quoted Markow.
  2. She’s had a very successful career since the lawsuit, with impressive academic titles and publications in top journals. She’s a professor at UC San Diego, not exactly where you go to escape genetics.
  3. A federal court judge threw out most of the accusations and the lawsuit was settled for $700,000 – a hundredth of what the Havasupai requested.
  4. Teri Markow emailed me back instantly.
  5. I could not find any published report by Markow about the Havasupai DNA and schizophrenia markers. There never was any such paper.

PubMed and Google Scholar list no references linking Markow to the Havasupai and schizophrenia, but I dug deeper. The mystery seemed solved when I read the papers she did publish about the Havasupai blood.

WHERE’S THE SCHIZOPHRENIA PAPER?

In 1991, a year after the Havasupai samples were collected, Markow, with the cultural anthropologist who’d asked her to do the study, published a short letter in The Lancet about their “basic research on genetic susceptibility,” and how educating the Havasupai and screening them for diabetes had helped them. No mention of schizophrenia.

Gene expression in schizophrenia (Mary-Claire King)

The follow-up full article appeared in The American Journal of Human Genetics in 1993. The 10-page paper showed that the Havasupai are not very variable at the HLA A and B gene clusters. (Before the genome era, HLA typing had been a way to estimate genetic variation or, in this case, its absence. Certain sets of HLA gene variants are associated with higher risks of developing certain illnesses.)

I read the AJHG paper very carefully, more than once, looking for the word “schizophrenia.” It wasn’t there. Finally, I stumbled upon the word in the acknowledgements, which cites a grant to Markow from the National Association for Research on Schizophrenia and Depression.

Could that really be the source of the stinging accusations? Had none of the accusers actually read and understood the key AJHG paper?

It’s hardly unusual for disease-associated organizations to help fund basic research, which is what the HLA work was. Basic research is where treatments begin. Such funding happens even more today, with government grants for genetics and genomics shifting from smaller labs to mega-center data-crunchers. Family-run not-for-profits often take over funding, including searches for genetic markers.

CURIOUSER AND CURIOUSER

With the sequencing of the human genome came higher resolution maps of genetic variability, overshadowing HLA associations. After Markow had moved to the University of Arizona in 1999, money became available to fund a graduate student back at ASU who wanted to look at microsatellite sequences. These short DNA repeats might reveal diabetes susceptibility genes beneath the radar of HLA typing. Markow wasn’t his mentor, but was on his committee because he’d use the samples she’d collected. Finding markers would counter the hypothesis that diet alone caused diabetes, the pet explanation of the anthropologist who’d started the study.

The student indeed found informative microsatellite markers, and for reasons still unknown to Markow, the anthropologist became alarmed, and alerted the Havasupai. Perhaps it was because the findings countered his hypothesis — I have no idea. He didn’t answer my email.

The anthropologist then brought a Havasupai, who’d donated her DNA, to the student’s thesis defense, in March 2003. All hell broke loose when she stood up and asked if the student had permission to do his work.

Unfortunately for all, the genetic details didn’t seem to matter once the Havasupai woman challenged the student defending his thesis. He had to retract publication of the findings, which might have led to a long-awaited diabetes susceptibility test that could have saved lives. Many in the media painted the withdrawal as an admission of guilt.

But it was too good a story to worry much about accuracy, and the narrative practically wrote itself, so beautifully did the perceived situation fit the history of what the Native Americans have suffered.

A Phoenix NewTimes article trumpeted the terrible tale. Under the headline “Indian Givers” the subhead bellowed, “The Havasupai trusted the white man to help with a diabetes epidemic. Instead, ASU tricked them into bleeding for academia.” Only it was worse. The evil white woman geneticist told the Indians she wanted to help them fight diabetes, and then used their DNA to link them to what they considered a stigmatizing mental illness. So the story went, and grew. Although Markow had published papers on schizophrenia, none had anything to do with the Havasupai.

When the university hired an outside attorney to investigate, evidence, in the form of interviews, emerged. One was with a graduate student who, in 1996, had asked Markow if he could look for genetic markers for schizophrenia in the Havasupai DNA. His mother had the disease, and perhaps he had inherited susceptibility. But the HLA data indicated too little genetic variation among the Havasupai to reveal markers, so on scientific grounds, Markow said no.

Even if schizophrenia had been surreptitiously studied in the Havasupai, it couldn’t have been done without their knowledge. “We’d have to train a psychologist or psychiatrist to give 2 hour oral interviews to each person, and it would have to be blinded, have a separate consent, and probably be videotaped,” Markow told me. The student was disappointed and angry. Then he and Markow argued after he’d forgotten to store some blood samples that had to be discarded. She tried, unsuccessfully, to oust him from her lab. Bad blood, so to speak.

THE TRAIL OF CRITICISM

The outside investigator interviewed the grad student, years later, at his day job, in a lab. At night he was incarcerated, punishment for a little sideline during grad school – shipping cocaine from the university to his brother in another state. That fact apparently never made it into the report.

The outside investigator also interviewed a physician who had drawn the Havasupai blood. While smoking dope with the Indians, he had told them that Markow was really studying schizophrenia and had instructed her co-workers to lie that it was only for diabetes, Markow and others told me. That student became a psychiatrist who is “retired or no longer practicing,” according to rate-your-doctor websites. So much for credible witnesses.

Like the weapons of mass destruction in Iraq, the narrative that the geneticist sought schizophrenia genes in Havasupai DNA became established fact with the repeating. Soon the accounts of the case began quoting and citing each other, as if the original documents that held the truth didn’t even exist. The IRB-approved informed consent document didn’t mention either diabetes or schizophrenia. The AJHG paper on HLA typing had only the damning grant acknowledgment. Yet google spits out “Therese Markow’s schizophrenia study” because it, too, repeats without thought.

Bioethicists latched onto the compelling story and have yet to let go. “Genomic Justice for Native Americans” in Science, Technology, & Human Values, for example, lays out the bait-and-switch schizophrenia-for-diabetes tale, and it was published in March 2013! Other bioethics articles chanted the schizophrenia mantra, citing each other, or quoting academics who also seemed as if they hadn’t read the science parts of the primary documents. It was such a great case, I was fooled too. I taught it in my “Genethics” course at Albany Medical College and included it in my human genetics textbook. Last week I yanked it from the upcoming 11th edition.

The most damaging account may have been the front page article in The New York Times.

The Pulitzer prizewinning journalist, who had befriended Markow, juxtaposed bits of truth to create an untrue implication that, being in The New York Times, was quoted everywhere, without challenge: “The two professors received money from the university to study diabetes in the tribe. Dr. Markow was interested in schizophrenia research as well, and in the summer of 1990, with a grant from the National Alliance for Research on Schizophrenia and Depression, she and her graduate students began collecting blood samples in Supai.

The Times editors shaved Markow’s response into meaninglessness. What I find most maddening is that a “Perspective” piece in the prestigious New England Journal of Medicine cites the New York Times article as reference #1, after the very first sentence, continuing the fable. Were the fact-checkers on vacation?

With all the paper and pixels devoted to the emotional tale of the Havasupai versus the geneticist, I am reminded of fictional accounts of societies that punish criminals before they commit their crimes. And the idea to look for schizophrenia wasn’t even hers, it was the anthropologist’s.

The outrage at what was purportedly done to the Havasupai metastasized, even after the 2010 settlement that gave the Indians 1% of their request. My outrage is instead directed at what was done to Teri Markow. She was in or near tears on the phone with me, and I felt terrible dredging up a past that she’s tried so hard to bury. “I met people at cocktail parties and they said, ‘are you the lady who stole the blood, and sold it to the pharmaceutical industry to make money?’”

REPERCUSSIONS

Why do I care about an old study that never had much of an impact outside bioethics circles because it didn’t leave a legal precedent? I care not only because the story is still circulating, but because I found a kindred spirit in Teri Markow.

I know what it feels like to be falsely accused.

I was sued over a photo of a young woman with a genetic disease that appeared in one of my textbooks. The photographer was at fault, yet interrogating attorneys reduced me to tears, for hours,  turning the good things I’d done – like winning a large grant to bring science experiments to underserved elementary schools – into conflicts of interest. They turned my email of apology into an admission of guilt, spinning a narrative that was pure fiction. And no one ever apologized for the year of stress.

The case of the geneticist and the Havasupai is so much worse. Why did so many reports fail to mention the good that Teri Markow brought to the community, like winning a grant to prepare Havasupai college students  for grad school? Why did articles twist events to seem as if she had intended all along to study schizophrenia?  And why oh why did no one realize that telling a good story, whether it was true or not, cut hurt scientific research meant to help?

Amplifying incidents such as these, based on misunderstanding genetics, will only fuel the fear that Native Americans and other indigenous peoples have towards outside researchers in general, and geneticists in particular — at a time when we finally have the genomic tools to help.

I will let Teri Markow have the final word, and thank her for the honor of sharing her story. “The most painful part was that the tribe is not going to let people on the territory to help them. The story spread all over Native American communities nationally. It took on a life of its own, and set back the health of tribes by decades by making them suspicious.”

This was first published on August 15th on the PLOS blog.  Click here to read the original article.

Ricki Lewis is the author of "The Forever Fix: Gene Therapy and the Boy Who Saved It," St. Martin's Press, March 2012.  To read more blogs from the author, please visit her site at http://www.rickilewis.com.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

1 comments | Topics: Genetic Testing, Genetics, Mental Health

Comments

Jessica Hilliard

Jessica Hilliard wrote on 08/16/13 1:27 AM

This article touches on an important concept I believe deserves much wider attention in the world of bioethics, which is that in accusation(s) of wrongdoing, perceptions can quickly overshadow the facts of the situation, and even highly trained medical and scientific professionals can succumb to subjective impressions without bothering to collect all of the pertinent details.

You describe this phenomena as it engulfed the career of an innocent geneticist, but I have seen it happen repeatedly in clinical settings as well. One specific example that is troubling in the world of pediatric medicine concerns the current fascination with "medical child abuse" cases. I have seen family after family accused of "over-medicalization" or "pediatric falsification disorder" or even "Munchhausen By Proxy Syndrome" regarding medically complex children (often patients with whom the leading doctors have had little luck in advancing their pet theories) in which doctors and other medical professionals ask for removal of a child from the family with practically no assessment of what has actually been happening in the child's care.

Social workers, DCF staff, and medical professionals in multiple specialties, fall prey to the "horror" the accusation induces, and the perceptions of the family that inevitably accompany it. Like the journals and newspapers you mention above, they end up quoting each other's perceptions, without any actual research or investigation into the facts of a situation. The parents are blamed for anything and everything that has ever gone awry in the child's care, and plenty of times completely distorted or even fabricated events of "wrong-doing" are added to "spice" up the accounts. People who have never met, or even laid eyes on the parents or the child, suddenly become the most knowledgeable about the case, and it becomes a circus of perception. All too often, facts are sadly absent from any part of the analysis, and no one even notices their absence.

The truly sad part is that while your article discusses a situation which could have ruined a good woman's career, these perceptions-gone-wild ruin families and destroy entire lives. The morbidity for members of families (including the child in question) forced to undergo these false accusations is highly underestimated.

The same problems are evident in these cases as in the situation you mentioned above: everyone buys into a dramatic story, and lets objective fact-finding be waylaid by the subjective excitement and perception of the situation. It is a pit-fall that can cause huge amounts of emotional, mental, and financial damage to the falsely accused. I am glad you highlighted one instance in which this type of behavior led to grievous misconduct. I would wish to see it highlighted more often, as awareness can only help the falsely accused, regardless of the situation. Furthermore it serves as a solemn reminder to all of us when involved in highly emotional cases, to examine our own motivations and reactions, and not just those of the "accused" in question.

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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.
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