Genetic Research among the Havasupai: A Cautionary Tale

Abstract

Imagine that you donated a bit of blood to a researcher whom you believed intended to identify a genetic link to a disease ravaging your community, only to discover years later not only that you had been misled, but that other researchers were mining your DNA for reasons that were never disclosed to you. What would you do? This was the case for the Havasupai Tribe in Arizona, who learned that researchers at Arizona State University (ASU) had gathered blood samples from them to search for a link to diabetes but used the samples to look for other diseases and genetic markers, thereby violating the basic tenets of human subject research. To determine where the breakdown between the Havasupai Tribe and ASU occurred, let's look at community-based participatory research and its underlying principles of informed consent.