“This knowledge is irrevocable.” So reads an opening line in the terms-of-service agreement for 23andMe, a leading direct-to-consumer genetic testing company. This remarkable phrase attests to an increasing recognition of the role genomic knowledge plays in shaping human life. On the one hand, genomic knowledge is a gift, creating novel insights into the genetic drivers of disease and into the geographical paths of our ancestors. On the other, it is a weight, creating new obligations, new forms of social classification, and new forms of surveillance. Thus, we are faced with a fundamental question: how can we live well in the face of knowledge that can change the criteria, conditions, and lived experience of life? Or, as we formulate that question for this conference, what is a good biocitizen?
This conference aims to take a step back and ask: In what ways can genomic knowledge promote human flourishing, and in what ways might it thwart it? What are the conditions that shape the biocitizen today, and how ought one act in light of these? Heeding not only the lessons of this history, but also our contemporary socio-political context, we wish to gain clarity on how genomics has shaped and is shaping lived experience. How, against the background of such knowledge, might we leverage genomic knowledge toward a life lived well in health for all?
October 4 and 5, 2018
Feil Hall, Forchelli Conference Center, 22nd Floor, 205 State Street Brooklyn, New York
Sponsored by The Hastings Center and Brooklyn Law School’s Center for Health, Science and Public Policy; co-sponsored by Columbia University’s Department of Medical Humanities and Ethics and Harvard Medical School’s Center for Bioethics