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

THURSDAY, OCTOBER 4 AND FRIDAY, OCTOBER 5, 2018

REGISTER HERE

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?
This conference will be livestreamed from this webpage starting on October 4, 2018 at 9 AM ET. For any questions about the livestream, email Marnie Klein at kleinm@thehastingscenter.org

DATES:

October 4 and 5, 2018

LOCATION:

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

Access the conference flyer here.


SPEAKERS: 

Catherine Bliss (University of California, 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)

CONFERENCE SCHEDULE:

Thursday, October 4, 8:15 am – 5:00 pm

REGISTRATION AND CONTINENTAL BREAKFAST: 8:15-9:00

  • 9:30-10:20 Colin Koopman “Coding the Self: The Biopolitics & Infopolitics of Genetic Sciences”

SHORT BREAK: 10:20-10:35 (Coffee & Snacks Provided)

  • 10:35-11:25 Lesley Larkin “On Contemporary Literature and the ‘Good Bionarrative Citizen'”
  • 11:25-12:15 Sandra Soo-Jin Lee “Excavating the Personal Genome: The Good Biocitizen in the Age of Precision Health”

LUNCH: 12:15-1:30 (Lunch on One’s Own)

  • 1:30-2:40 Melinda Hall “On The Language of Risk and the Marginalization of Bodies”
  • 2:40-3:30 Catherine Clune-Taylor  “How the Genomics of Intersex Conditions Undermines Biological “Truth” Regarding Sex, Gender, and Sexuality”

BREAK: 3:30-3:50 (Light Snacks Provided)

  • 3:50-4:40 Joseph Stramondo “Narrative Determinism: Disability, Relational Identity, and the Damaging Master Narrative of an Open Future”
  • 4:40-5:00: Wrap-up Observations and Questions

Friday, October 5, 2018, 8:15 am – 5:00 pm

CONTINENTAL BREAKFAST: 8:15-9:00

  • 9:00-9:50 Jessica Kolopenuk “Visions of Star Women Among Colonial Constellations: A Cree Theory of Surveillance and Canada’s National Missing Persons DNA Program”
  • 9:50-10:40 Catherine Bliss (Remarks will be read by Rosalie Winslow) “Given Genomics’ Potential for Reinscription of Erroneous Notions of Race, How Should One Think about Race Ethically in the Genomic Age?”

SHORT BREAK: 10:40-11:00 (Coffee & Snacks Provided)

  • 11:00-11:50 Eva Kittay “How Much of a Gift or Weight Is Genomics from the Perspective of Care?”

LUNCH 11:50-1:00 (Lunch on One’s Own)

  • 1:00-1:50 Carolyn Neuhaus “Bearing Weight to Produce the Gift of Genomic Knowledge”
  • 1:50-2:40 Alondra Nelson “The Politics of Genomics in the USA: the OSTP and the PMI”

SHORT BREAK: 2:40-3:00 (Light Snacks Provided)

  • 3:00-4:00 Jenny Reardon “How Should We Understand the Relationship between Genomics, Justice, and Democracy?”
  • 4:00-5:00 Roundtable Discussion

REGISTER HERE


This conference will have live on-screen captioning and will be livestreamed. Send inquiries about the conference and any accessibility-related requests to reynoldsj@thehastingscenter.org. 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 louise.cohen@brooklaw.edu or (718) 780-0377. 

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