Mistrusting Genetic Researchers
The December 10 issue of the New York Times has an interesting article by Amy Harmon entitled "DNA Gatherers Hit a Snag: The Tribes Don’t Trust Them".
The DNA gathering project at issue is one funded by the National Geographic Society "to collect DNA from indigenous groups around the world in the hopes of reconstructing humanity’s ancient migrations".
The fear is that origins and migrations reconstructed from DNA evidence may undermine other important concerns of indigenous groups: religious stories of origins, land rights, access to government-provided benefits such as health care, etc. Although it seems that peoples in most parts of the world have not worried about these issues, some in Alaska have pointed to potential difficulties.
“What if it turns out you’re really Siberian and then, oops, your health care is gone?� said Dr. David Barrett, a co-chairman of the Alaska Area Institutional Review Board, which is sponsored by the Indian Health Service, a federal agency. “Did anyone explain that to them?�
However this eventually works out, the lessons for researchers who want to do community-based research are clear: There's a lot of mistrust out there, much of it justified; benefits to the community as well as to the investigators need to be understood; and trust needs to be earned before research can, or should, be done.