An isolated Indian tribe living in the Grand Canyon has successfully pressured Arizona State University to return blood samples which had been used for unauthorised genetic research. “I’m not against scientific research,” said Carletta Tilousi, 39, a member of the Havasupai tribal council, told the New York Times. “I just want it to be done right. They used our blood for all these studies, people got degrees and grants, and they never asked our permission.” The university has paid US$700,000 to 41 members of the tribe and has destroyed the samples.

This could be the first time that scientists have been forced to pay compensation for misusing DNA material. The standard for informed consent for drug testing and medical procedures is fairly clear, but informed consent for tissue samples for DNA research is a murky area. In this case, a geneticist, Therese Markow, collected blood samples from about 100 members of the Havasupai between 1990 and 1994. They believed that her research would help find a cure for the diabetes which had become a terrible problem for them. However the consent form said that the samples could be used to “study the causes of behavioral/medical disorders.”

In 2003 Ms Tilosi, one of the few members of the 650-member tribe to have attended college, discovered that more than 20 articles had been published using the samples. The members of the tribe were angry and hurt.

The outcome worries researchers. Will they need to create a massive databank of permissions for each tissue sample that they collect for genetic research? If a patient donates blood for research on Alzheimer’s, why can’t it be used to study a related condition later on? ~ New York Times, Apr 22