Thread by @Paracelsus1092

In 1990 a tiny tribe of Native Americans donated some blood samples to researchers at Arizona State University, to try and understand their soaring rates of diabetes.

The controversy that followed went on to shape Native American DNA research and modern bioethics.

In 2003 one of the tribe, the Havasupai, attended a doctoral presentation, and discovered that their previously donated blood had been used for purposes other than diabetes research.

All hell broke loose. A university investigation uncovered about 12 papers that had used the blood research data in some way over the last 10 years.

Two particularly egregious studies involved analysing the Havasupai blood for markers of schizophrenia, and claiming that their genetics proved the tribe migrated from elsewhere, contrary to their beliefs.

The tribe sued ASU and the lead geneticist, Dr Teri Markow. It's hard to know how many claims were filed and pursued, how many courts, private investigators and committees were involved, but the line was clear - the Havasupai did not consent to research beyond diabetes.

The outcome was a financial settlement, and the right for the Havasupai to reclaim their samples, which they did, with great solemnity and ritual.

The media ran multiple gleeful stories: the Phoenix New Times led with “Indian Givers, The Havasupai trusted the white man to help with a diabetes epidemic. Instead, ASU tricked them into bleeding for academia.” The narrative was too perfect to let up.

The story has entered the textbooks as a classic example of postcolonial exploitation, bioethical injustice and inequality.

The only trouble is - how much of this story is true?

In 2013 a piece appeared on PLOS blog entitled 'Is the Havasupai Indian Case a Fairy Tale?'

In it the author defends Markow, detailing how many of the claims against her are based on flimsy to non-existent evidence.

The first paper based on the blood samples back in 1993 had looked for variation in HLA genes across the group, as a way of producing some early evidence for genetic susceptibility to diabetes. Was this the evidence for research into schizophrenia?

Rather than ignoring diabetes, which was a central claim of the Havasupai, the infamous 2003 doctoral presentation was a look at DNA microsatellites and how they could reveal associations with diabetes. But an irate anthropologist had decided this was not acceptable.

Far from secretly studying schizophrenia, Markow claimed that she had denied permission for a student to use the samples for exactly that.

The Havasupai and other academics believed that Markow had been lying from the very beginning, that the original diabetes study in 1990 was a cover for schizophrenia research.

Well, was it? That 1993 paper was part funded by a grant from the National Alliance for Research on Schizophrenia and Depression.

The exact details of the grant appear to have been lost to time, or misplaced? Markow's defenders say grants are fairly flexible, her detractors point to letters of intention, letters which mention schizophrenia research on the Havasupai.

The controversy hasn't stopped Markow from pursuing a distinguished career, and few people are interested in digging up the details again. We'll likely never know the whole story...

What is clear is that the case has impacted early genetic studies involving Native Americans, which is a huge shame since modern genomics holds so much potential for health, fertility and longevity.