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Announcing the 5th ELSI Congress Special Issue of the American Journal of Bioethics

We are pleased to announce the publication of a special issue of the American Journal of Bioethics

The 5th ELSI Congress issue includes five target articles, thirty-one open peer commentaries, and two guest editorials focused on equity and inclusion of diverse publics in genomic and precision medicine research. Target articles in the issue represent work presented at the 5th ELSI Congress: Innovating for a Just and Equitable Future held May 31 - June 3, 2022, a biennial conference supported by the National Human Genome Research Institute (NHGRI) at the National Institutes of Health (NIH) and organized by the ELSI Congress 2022 Organizing Committee.1 The committee selected the theme of advancing equity and justice in the context of ELSI research and solicited a call for presentations that resulted in a congress attended by approximately 600 participants.

After the congress, CERA issued a separate call for papers devoted to the congress theme for this special issue and solicited all conference presenters to submit a proposal for an article. Proposals were selected by a guest editorial board2 that included expertise and experience in bioethics, public health genetics, anthropology, law, philosophy, and health policy. The final papers were chosen for their capacity to catalyze questions about equity and justice in their engagement with public policy, participatory democracy, advocacy, and access to genomic and precision medicine.

Authors in the issue reflect multi-disciplinary, multi-institutional collaborations inside and outside of the U.S. They address a range of ELSI research that surfaces critical questions about equity for the future of genomics and precision medicine. From their vantage points in the varied sites of these research enterprises, the authors argue for the need to assess carefully what, who, and how patients, research participants, families, communities, and nation-states may benefit and the importance of addressing competing individual and collective interests in defining public good. In addition, several of these articles raise the question of what meaningful engagement with communities looks like or should be.

Guest Editorials:
Target Articles: 
Open Peer Commentaries:


1The ELSI Congress was co-directed by Sandra Soo-Jin Lee and Mildred Cho, who convened an organizing committee that included Dounya Alami-Nassif (Columbia University), Paul Appelbaum (Columbia University), Jessica Blanchard (University of Oklahoma), Joy Boyer (NHGRI), Larry Brody (NHGRI), Shawneequa Callier (George Washington University), Mildred Cho (Stanford University), Deanne Dunbar Dolan (Stanford University), Gail Henderson (University of North Carolina), Steven Joffe (University of Pennsylvania), Angelica Johnson (Columbia University), Dave Kaufman (NHGRI), Gabriel Lázaro-Muñoz (Harvard Medical School), Sandra Soo-Jin Lee (Columbia University), Nicole Lockhart (NHGRI), Caroline Moore (Stanford University), Osagie Obasogie (UC Berkeley), Lisa Parker (University of Pittsburgh), Kayte Spector-Bagdady (University of Michigan), Rene Sterling (NHGRI), James Tabery (University of Utah), Wendy Uhlmann (University of Michigan), Emily Van Poetsch (Stanford University), Joe Vitti (Broad/Harvard/MIT), Alexis Walker (Columbia University), Joon-Ho Yu (University of Washington), and Rachel Yarmolinsky (Columbia University).

2The guest editorial board for this issue included: Jessica Blanchard, Shawneequa Callier, Mildred Cho, Deanne Dunbar Dolan, Gabriel Lázaro-Muñoz, Sandra Soo-Jin Lee, David Magnus, Kayte Spector-Bagdady, James Tabery, and Joon-Ho Yu.