An interesting story in the NY Times last month “Indian Tribe Wins Fight to Limit Research of Its DNA” details a dispute over the use of DNA samples collected by researchers from Arizona State University from members of the Havasupai Indians tribe. The case has now reached a settlement. The NY Times item reports: (emphasis is my own)
“…the university’s Board of Regents on Tuesday agreed to pay $700,000 to 41 of the tribe’s members, return the blood samples and provide other forms of assistance to the impoverished Havasupai — a settlement that legal experts said was significant because it implied that the rights of research subjects can be violated when they are not fully informed about how their DNA might be used.”
It goes on to say:
“But genetics experts and civil rights advocates say it may also fuel a growing debate over researchers’ responsibility to communicate the range of personal information that can be gleaned from DNA at a time when it is being collected on an ever-greater scale for research and routine medical care.”
The Scope Medical Blog where I first read about the case (thanks for sending me the link Jeremy!), quotes a law professor and director of the Center for Law and Biosciences as saying the Havasupai case is a “big deal” and that he thinks “science has been taking a too cavalier view of how broadly it can use samples and data it gets from people for one purpose” “. The Scope Blog item was making references to the much older case of Henrietta Lacks and questioning whether the Havasupai case will provide a means for her descendents to seek redress.
Whilst on the subject of PIC it might be of interest to note that in 2008 CAS-IP presented draft guidelines for the acquisition and use of traditional knowledge by CGIAR scientists. These guidelines were presented to the CGIAR’s Genetic Resources Policy Committee (GRPC) and can be viewed: http://www.cas-ip.org/resources/publications/traditional-knowledge-guidelines/