Die Entnahme von Bio-Material und Bio-Information an der Universität Kalifornien, Berkeley, USA 2010. Ein Fallbeispiel

In this paper, I describe an experiment where incoming students to UC Berkeley were asked to send in buccal swabs to campus before arriving, so that the freshman class could have their DNA tested and their results for various traits aggregated. The program proved highly controversial: there was insufficient privacy protection for students, the correct means of delivering and following up medically relevant findings had not been worked out, corporate involvement in the testing was inappropriate in an educational setting, and ownership of samples and bioinformation over time had not been resolved. Aspects of the student DNA testing program were eventually shut down. I was involved in advocating changes to the program, calling for students to learn the biological techniques and social and ethical aspects of giving biomaterial rather than having someone else sequence their DNA and keep their aggregate data. I developed a program called “Teach Before You Test,” which I describe here. This paper contributes to my body of work on the changing relation of individuals and societies to their biological tissue in the age of personalized medicine.