by Emily Butler, content coordinator
Aside from some temporary discomfort, most people would agree that drawing blood does not carry major physical or psychological risks. But what if a blood sample is used to tell personal stories about an individual, or about a community? What if DNA research reveals deeply personal information such as mental illness, inbreeding, and genealogical origins? Do you think participants should be informed that their DNA will be used for this kind of research?
The Havasupai Indians think so. Yesterday’s article in The New York Times explains how 41 of the tribe’s members were awarded an unprecedented $700,000 settlement in retribution for the wrongful use of their DNA blood samples collected between 1990 and 1994.
When researchers at Arizona State University sought permission to study the causes of behavioral/medical disorders in the Havasupai tribe, many obliged. One hundred tribe members signed a general consent form, and provided blood samples in hopes that the researchers would discover the origins of the diabetes epidemic that had begun to plague their community.
But in 2003, the donors were shocked to hear that researchers were actually using the DNA to study the incidence of mental illness and inbreeding, and revealed geographical origins that contradict the tribe’s traditional beliefs about their history.
The Havasupai’s story illustrates a critical need to evaluate the informed consent process in DNA research. But as the article points out, some scientists argue that allowing subjects to stipulate the types of research for which their DNA may be used could impede scientific advancement.
What are your thoughts on the Havasupai’s story? And, how do you think research institutions and IRBs can ensure that these same mistakes are not repeated?