For “All of Us”? On the Weight of Genomic Knowledge
Edited by Joel Michael Reynolds and Erik Parens
This collection of essays is the first written product of The Hastings Center’s Initiative in Bioethics and the Humanities. This new initiative, which we created with generous support from the National Endowment for the Humanities and private donors, has three aims. The first is to bring together insights from the humanities and the sciences to advance public conversation about the ancient question, how should we live? The second aim is to cultivate a habit of thinking that increases our chances of talking with, rather than past, others as we attempt to engage in that conversation. The third is to support young scholars in the humanities who seek to promote truly integrative and open‐minded public conversation regarding an ethical matter about which they care deeply.
In pursuit of that third aim, in 2017, The Hastings Center selected Joel Michael Reynolds to be its inaugural Rice Family Postdoctoral Fellow. In his first year, Joel and I planned the conference, called “The Gift and Weight of Genomic Knowledge: In Search of the Good Biocitizen,” that gave rise to the collection of essays before you. We happily shared the gratifying work of collaborating with conference presenters to turn their talks into the essays before you.
We held the conference at the Brooklyn Law School on October 4 and 5, 2018. Joel and I thank Karen Porter, the executive director of BLS’s Center for Health, Science, and Public Policy, for her insight in conceiving the conference and for her generosity in creating such a welcoming space for conversation. We thank Christine Mitchell, the executive director of the Center for Bioethics at Harvard Medical School; Rita Charon, a professor and the chair of the Department of Medical Humanities and Ethics at Columbia University; and Mildred Solomon, the president of The Hastings Center, for providing funds without which we could not have convened the conference. We also thank Isabel Bolo, Elizabeth Dietz, Marnie Klein, Ben Wills, Rachel Zacharias (all formerly or currently at The Hastings Center), and Liz Alpert (from BLS) for their tireless work on the logistical details that were essential for the success of the conference. Finally, we thank the astute reviewers of manuscripts for this special report. Without their wise counsel, this collection would not now be in your hands.
TABLE OF CONTENTS
Health for Whom? Bioethics and the Challenge of Justice for Genomic Medicine
Joel Michael Reynolds
Conceptualizing Race in the Genomic Age
Provoking Bad Biocitizenship
Disability and the Damaging Master Narrative of an Open Future
Joseph A. Stramondo
Does Solidarity Require “All of Us” to Participate in Genomics Research?
Carolyn P. Neuhaus