In 1990, members of the Havasupai Indian tribe of Arizona thought they were giving blood samples for researchers to study diabetes.
Instead, their DNA was used to study inbreeding, ancient population migration and schizophrenia.
In a case they call “genetic piracy,” the Havasupai have just settled their seven-year legal fight with Arizona State University (ASU).
This case marks the first time individuals have received compensation for misuse of their DNA over the issue of informed consent, or providing full information about how the DNA is likely to be used.
The tribe claims ASU conducted the additional research without permission and without informing tribal members, instead misrepresenting what had been done with the blood samples.
The case raises questions over ownership of biological material and the exploitation of others.
The settlement includes a lump sum of $700,000, which is payable to 41 plaintiffs. The tribe had asked for $50 million. ASU will help the tribe build a new health clinic and high school and return more than 200 blood samples, some of which will be buried with their donors.
"Their spirits will no longer be locked in a cooler," said Carletta Tilousi, the lead plaintiff in the case and a tribal councilwoman, reports AP. "We are going to take them back down to Supai Canyon so they can rest in peace."
Tilousi’s late aunt, who suffered from diabetes, had requested the research be done to find a cure to the disease.
The New York Times reports that researcher Therese Markow defended her ethics and her research by saying “I was doing good science” to the NYT.
Hank Greeley, a law professor at Stanford University tells Top News that this code of conduct brings a sense of suspicion and distrust to science and researchers.
The case is reminiscent of the 1930’s research into syphilis at the Tuskegee Institute. Researchers recruited more than 300 black men then failed to treat them with penicillin.
The concern is that private companies can patent human genes and use them for profit and proprietary material is less likely to be shared for research.
The Center for Genetics and Society recently applauded a court ruling that invalidated patents on genes associated with breast and ovarian cancer deciding that human genes cannot be patented because they are products of nature.
The Center believes, “Human biotechnologies can promote or undermine individual well-being and public health, create private fortunes or advance the public interest, and foster or threaten a just and fair society.” #