© BORTONIA/ISTOCKPHOTO.COMWhen geneticists take off their lab coats, leave the confines of their classrooms and workspaces, and venture into ethnic minority communities to share their work, they are fostering open discourse in a setting built on trust, understanding, autonomous decision-making, and participation. The creation of a “genetics table,” at which every party is welcome to discuss any and all emerging scientific and social issues related to genetics research, not only encourages inclusivity, but allows for frank, open discourse between ethnic minorities and researchers.
Controversial topics such as eugenics, cloning, scientific racism, and medical profiling are among those most likely to be broached by ethnic minorities. Long-held memories of the Tuskegee syphilis experiments and the more recent case of Henrietta Lacks’s cells being harvested without her consent—and subsequently used for profit—resonate within African American communities. (See “Debating Bioethics Openly,” The Scientist, July 2013.) With such an eye to the past, minority groups are apt to feel there are not enough ethical constraints in place to protect them from potential deception or abuse if they participate in genetics research.
The same ethical issues are also relevant to biobanking, which raises concerns over the possibility of for-profit products being derived from volunteers’ samples. And while ethnic minorities may rightfully wish to ...
