Sad sad science

March 26, 2009 at 4:02 pm Leave a comment

It is sad cases like this that give science a bad name.  The person at the center of this scandal is the UA’s own darling Regents Professor Markow, now transitioning to UCSD.

This case is important for many reasons.  I have always asked why in our lab we don’t study more Native American DNA.  The response from everyone, even those who are just visiting from other schools, is always just two words, “Terry Markow.”  I decided to look into this.

If the allegation prove to be true, and the evidence appears to point that way, then this is a sad abuse of her power and responsibility to the community she is supposed to be helping out… not damaging in the way she has.

Therese Markow

Below are some excerpts from an in-depth article on this topic. You may know some of these people…

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.

Arizona’s Broken Arrow – Phoenix Magazine .

Chris would also go through the clinic’s records at night:

Between 1990 and 1992, more than 200 blood samples were drawn. An assistant to Markow actually slept in the Supai medical clinic while gathering the samples. At night, he clandestinely examined the clinic’s records, looking for reports of schizophrenia among tribe members, according to court records.
– via Arizona Republic
Former Havasupai chairman and his wife

What about the impact to the Havasupai? I think it is sad what has happened, and it is sad that those that abused their trust will probably get away with it.

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.

Wescogames

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.”

What happened?

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.”

– via Arizona’s broken arrow – Phoenix Magazine

Supai village

Supai village at the bottom of the Grand Canyon

Advertisements

Entry filed under: Culture, Math and science. Tags: , , , , , , , , .

Game Theory and Genetics coalesce Phoenix hates on Obama at Notre Dame

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Trackback this post  |  Subscribe to the comments via RSS Feed


Pages

Twitter Updates

Error: Twitter did not respond. Please wait a few minutes and refresh this page.

RSS Democracy Now!

  • Dr. Barbara Ransby: What the Defamation of Anita Hill Can Teach Us About the Kavanaugh Hearings
    News that Dr. Christine Blasey Ford will testify Thursday against Supreme Court nominee Judge Brett Kavanaugh has prompted many to warn senators not to repeat the mistakes of the Anita Hill hearings of 1991, when Hill was questioned by an all-male, all-white Senate Judiciary Committee over her allegations that then-Supreme Court nominee Clarence Thomas had s […]
    mail@democracynow.org (Democracy Now!)
  • "Survivors Must Be Heard": 1,100 Alumnae of Dr. Blasey Ford's H.S. Demand FBI Investigate Kavanaugh
    Dr. Christine Blasey Ford has agreed to testify before the Senate Judiciary Committee on Thursday about her allegations that Kavanaugh attempted to rape her when she was 15 years old and he was 17 years old. More than 1,100 alumnae of the Holton-Arms School, the Maryland prep school that Blasey Ford graduated from in 1984, have signed a letter in support of […]
    mail@democracynow.org (Democracy Now!)
  • Report: Senate Aides Knew of Second Kavanaugh Sexual Assault Claim & Tried to Rush His Confirmation
    Senator Dianne Feinstein is calling for the immediate postponement of the nomination proceedings of Supreme Court nominee Brett Kavanaugh after a second woman has come forward alleging sexual misconduct by the judge. Deborah Ramirez, a former classmate of Kavanaugh's at Yale University, has accused him of exposing himself and thrusting his penis into he […]
    mail@democracynow.org (Democracy Now!)
  • Headlines for September 24, 2018
    Feinstein Calls for Postponing Kavanaugh Nomination Process After Second Woman Speaks Out, Trump Questions Blasey Ford's Attempted Rape Claim, Trump Admin to Deny Green Cards to Immigrants Who Collect Public Assistance, NYT: Rosenstein Suggested Secretly Recording President Trump, Iran Blames U.S. & Gulf States After 29 Die in Attack on Military Par […]
    mail@democracynow.org (Democracy Now!)
  • Michael Moore: Are We Going to Be Like the "Good Germans" Who Let Hitler Rise to Power?
    In his new documentary "Fahrenheit 11/9," filmmaker Michael Moore interviews the last surviving Nuremberg prosecutor, Ben Ferencz, who describes President Trump's policy of family separations at the U.S.-Mexico border and the large-scale detention of immigrant children as a "crime against humanity." Moore also looks at the rise of Hi […]
    mail@democracynow.org (Democracy Now!)
  • Michael Moore: Democrats Made Fatal Mistake in Not Taking Trump More Seriously in 2016
    In July, 2016, Michael Moore wrote a column titled "Five Reasons Why Trump Will Win." In it, Moore wrote, "Donald J. Trump is going to win in November. This wretched, ignorant, dangerous part-time clown and full time sociopath is going to be our next president. President Trump. Go ahead and say the words, 'cause you'll be saying them […]
    mail@democracynow.org (Democracy Now!)
  • Trump Warned Michael Moore Not to Make a Film About Him in 1998 Interview on Roseanne Show
    We continue our conversation with Michael Moore about his interaction with Donald Trump on Roseanne Barr's talk show in November 1998. Moore had released the film "Roger & Me" nine years earlier. Trump was upset to learn the two would be appearing together and threatened to leave, Moore says. Michael Moore negotiated with Trump, asked him […]
    mail@democracynow.org (Democracy Now!)
  • Michael Moore vs. Donald Trump in "Fahrenheit 11/9": New Film Warns Our Democracy Is At Risk
    "Fahrenheit 11/9"—That's the name of the new documentary premiering today by Oscar-winning filmmaker Michael Moore, a stunning retelling of the 2016 election and its aftermath. 11/9. That's November 9, the day Donald Trump won the 2016 presidential election. In the film, Michael crosses the country, documenting not only the rise of Trumpi […]
    mail@democracynow.org (Democracy Now!)
  • Headlines for September 21, 2018
    Dr. Christine Blasey Ford Offers to Testify About Kavanaugh Attempted Rape Allegations, Republican Congressman Jokes That Abraham Lincoln Groped Ruth Bader Ginsburg, State Department Specialists Opposed Pompeo's Decision to Keep Backing Saudi Assault in Yemen, Dozens of Undocumented Immigrants Arrested While Trying to Retrieve Children in Custody, Trump […]
    mail@democracynow.org (Democracy Now!)
  • American Prison: Shane Bauer Traces History of U.S. For-Profit Prisons from Slavery to Today
    "American Prison." That's the name of the new book by award-winning journalist Shane Bauer, who dives deep into the profit-earning motives of U.S. prisons, from convict labor in colonial-era settlements all the way to present-day mass incarceration, including Bauer's own stint as an undercover prison guard at the privately owned Winn Corr […]
    mail@democracynow.org (Democracy Now!)

RSS Science Blogs

  • We’re moving!!!! [Life Lines]
    You may be wondering why I have been so sentimental even though the year is not over yet. I am happy to inform you that it is not because I am retiring. On the contrary, I am packing up my virtual bags and moving this blog to a new site! Pardon the dust while we get…
    Dr. Dolittle
  • Last Post [Greg Laden's Blog]
    This is my last post at Scienceblogs.com. In the future I will be blogging at Greg Laden’s blog, located at its original home at gregladen.com. I have a feeling that Scienceblogs will not last long without me. What do you think? 🙂 But seriously, I’ll be talking about the story of the current status and…
    Greg Laden
  • #1: Is there an evolutionary advantage to “being stupid”? [Life Lines]
    And the #1 blog entry published thus far in 2017 discussed whether there was an evolutionary advantage to being stupid: —- As I was looking through the scientific literature the other day, I came across an article published in 1973, “The Evolutionary Advantages of Being Stupid.” With a title like that, how could I not…
    Dr. Dolittle
  • The Last Goodbye [Starts With A Bang]
    What better way to say farewell than with a slew of costume pictures from this year’s (coming) Halloween? Goodbye, Scienceblogs, it’s been an incredible almost-decade. Hope to see you all in all our other endeavors!
    Ethan
  • #2: A Truly Extraordinary Octopus [Life Lines]
    Who could forget the second most popular blog post so far this year. Seeing an octopus walk never gets old! ——- I came across this amazing video on YouTube showing a species of octopus found in Northern Australia that is adapted to walk on land:
    Dr. Dolittle
  • #3: Zebra Finches Reward Themselves for singing well [Life Lines]
    The #3 post so far this year explored how zebra finches reward themselves for singing well: Dopamine is an important hormone released from neurons involved in reward pathways. Researchers at Cornell University wanted to know if dopamine signaling was involved in how birds learn songs. Their findings, recently published in Science, present evidence that neuro […]
    Dr. Dolittle
  • Comments of the Week: Final edition? [Starts With A Bang]
    “You endure what is unbearable, and you bear it. That is all.” -Cassandra Clare Well, the cat’s out of the bag. A little over a week ago, Scienceblogs announced to us writers that they no longer had the funds to keep the site operational, and so they would be shutting down. They asked us to…
    Ethan
  • #4: Komodo Dragons have antibacterial blood [Life Lines]
    Here is the 4th most popular post so far this year: Picture of a komodo dragon by CC BY-SA 3.0, via Wikimedia Commons Researchers studying komodo dragons (Varanus komodoensis) at George Mason University discovered 48 previously unknown peptides in their blood that might have antimicrobial properties. Their findings were published in the Journal of Proteome R […]
    Dr. Dolittle
  • Back by popular demand: the Venezuelan poodle moth [Life Lines]
    It is hard to believe that I have been sharing my passion for comparative physiology and its application to human and animal health with you for over 7 years now! In reminiscing over the last 7 years, I thought it would be fun to look back at the most popular posts. So, here goes… The…
    Dr. Dolittle
  • Comments of the Week #180: From the planets Kepler missed to the NASA photos that changed the world [Starts With A Bang]
    “We do not realize what we have on Earth until we leave it.” -Jim Lovell Well, the Scienceblogs comments are still on the fritz, requiring me to manually un-spam them one-at-a-time, but Starts With A Bang! is still going strong with some fabulous stories based on the best knowledge we have! This next week is poised to…
    Ethan

RSS AZ Daily Star

  • An error has occurred; the feed is probably down. Try again later.

%d bloggers like this: