The Gift and Weight of Genomic Knowledge: In Search of the Good Biocitizen

“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?

Speakers:

Catherine Bliss (UC San Francisco)
Alondra Nelson (Columbia University)
Catherine Clune-Taylor (Princeton University)
Carolyn Neuhaus (The Hastings Center)
Eva Kittay (SUNY Stony Brook)
Jenny Reardon (UC Santa Cruz)
Melinda Hall (Stetson University)
Sandra Soo-Jin Lee (Stanford University)
Colin Koopman (University of Oregon)
Joe Stramondo (San Diego State University)
Leslie Larkin (Northern Michigan University)
Jessica Kolopenuk (University of Alberta)

Information about the live-streaming of this event will be released on the event webpage in the week prior to the event. This conference will have live on-screen captioning and will be livestreamed. Send inquiries about the conference and any accessibility-related requests to [email protected]. Requests for a reasonable accommodation based on a disability to attend this event should also be made to Louise Cohen, the BLS Reasonable Accommodations Coordinator, at [email protected] or (718) 780-0377.