Illustrative image for The Gift and Weight of Genomic Knowledge In Search of the Good Biocitizen

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 aimed 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

Access the conference flyer here.


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)
Lesley Larkin (Northern Michigan University) Jessica Kolopenuk (University of Alberta)


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


  • 9:00-9:10 Karen Porter Welcome on Behalf of Brooklyn Law School
  • 9:10-9:20 Erik Parens, Welcome on Behalf of The Hastings Center and Introduction of the Theme
  • 9:20-9:30 Joel Michael Reynolds Welcome and Introductory Comments

[bs_collapse id=”collapse_0b06-8a50″] [bs_citem title=”View Video” id=”citem_42c4-6e46″ parent=”collapse_0b06-8a50″][/bs_citem] [/bs_collapse]

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

[bs_collapse id=”collapse_0b06-8a51″] [bs_citem title=”View Video” id=”citem_42c4-6e47″ parent=”collapse_0b06-8a51″][/bs_citem] [/bs_collapse]

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

  • 10:35-11:25 Lesley Larkin “On Contemporary Literature and the ‘Good Bionarrative Citizen'”

[bs_collapse id=”collapse_0b06-8a52″] [bs_citem title=”View Video” id=”citem_42c4-6e48″ parent=”collapse_0b06-8a52″][/bs_citem] [/bs_collapse]

  • 11:25-12:15 Sandra Soo-Jin Lee “Excavating the Personal Genome: The Good Biocitizen in the Age of Precision Health”

[bs_collapse id=”collapse_0b06-8a53″] [bs_citem title=”View Video” id=”citem_42c4-6e49″ parent=”collapse_0b06-8a53″][/bs_citem] [/bs_collapse]

LUNCH: 12:15-1:45 (Lunch on One’s Own)

  • 1:45-2:35 Melinda Hall “On The Language of Risk and the Marginalization of Bodies”

[bs_collapse id=”collapse_0b06-8a54″] [bs_citem title=”View Video” id=”citem_42c4-6e50″ parent=”collapse_0b06-8a54″][/bs_citem] [/bs_collapse]

  • 2:35-3:25 Catherine Clune-Taylor  “How the Genomics of Intersex Conditions Undermines Biological “Truth” Regarding Sex, Gender, and Sexuality”

[bs_collapse id=”collapse_0b06-8a55″] [bs_citem title=”View Video” id=”citem_42c4-6e51″ parent=”collapse_0b06-8a55″][/bs_citem] [/bs_collapse]
BREAK: 3:25-3:45 (Light Snacks Provided)

  • 3:45-4:35 Joseph Stramondo “Narrative Determinism: Disability, Relational Identity, and the Damaging Master Narrative of an Open Future”

[bs_collapse id=”collapse_0b06-8a56″] [bs_citem title=”View Video” id=”citem_42c4-6e52″ parent=”collapse_0b06-8a56″][/bs_citem] [/bs_collapse]

  • 4:35-5:00: Wrap-up Observations and Questions. Joel Michael Reynolds, Karen Porter, and Erik Parens.

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


  • 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 to Re-Inscribe Erroneous Notions of Race, How Should One Think about Race Ethically in the Genomic Age?”

[bs_collapse id=”collapse_0b06-8a58″] [bs_citem title=”View Video” id=”citem_42c4-6e54″ parent=”collapse_0b06-8a58″][/bs_citem] [/bs_collapse]
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?”

[bs_collapse id=”collapse_0b06-8a59″] [bs_citem title=”View Video” id=”citem_42c4-6e55″ parent=”collapse_0b06-8a59″][/bs_citem] [/bs_collapse]
LUNCH 11:50-1:15 (Lunch on One’s Own)

  • 1:15-2:05 Carolyn Neuhaus “Bearing Weight to Produce the Gift of Genomic Knowledge”

[bs_collapse id=”collapse_0b06-8a60″] [bs_citem title=”View Video” id=”citem_42c4-6e56″ parent=”collapse_0b06-8a60″][/bs_citem] [/bs_collapse]

  • 2:05-2:55 Alondra Nelson “The Politics of Genomics in the USA: The Office of Science and Technology Policy and the Precision Medicine Initiative

SHORT BREAK: 2:55-3:15 (Light Snacks Provided)

  • 3:15-4:05 Jenny Reardon “How Should We Understand the Relationship between Genomics, Justice, and Democracy?” 

[bs_collapse id=”collapse_0b06-8a61″] [bs_citem title=”View Video” id=”citem_42c4-6e57″ parent=”collapse_0b06-8a61″][/bs_citem] [/bs_collapse]

  • 4:05-4:30 Wrap-up Observations: Joel Michael Reynolds, Karen Porter, and Erik Parens
  • 4:30 Conference Concludes

This conference had on-screen captioning and was livestreamed.