Ethical, Legal, and Social Issues in the Earth BioGenome Project

Sherkow, Jacob S.; Barker, Katharine; Braverman, Irus; Cook-Deegan, Bob; Durbin, Richard; Easter, Carla; Goldstein, Melissa; Hudson, Maui; Kress, W. John; Lewin, Harris; Mathews, Debra J.H.; McCarthy, Catherine; McCartney, Ann; da Silva, Manuela; Torrance, Andrew W.; Greely, Henry T.

doi:10.2139/ssrn.3840280

Ethical, Legal, and Social Issues in the Earth BioGenome Project

University of Illinois College of Law Legal Studies Research Paper No. 21-10

University at Buffalo School of Law Legal Studies Research Paper No. 2020-013

13 Pages Posted: 6 May 2021 Last revised: 25 Jun 2021

See all articles by Jacob S. Sherkow

Jacob S. Sherkow

University of Illinois College of Law; University of Illinois at Urbana-Champaign - Carl R. Woese Institute for Genomic Biology; Center for Advanced Studies in Biomedical Innovation Law

Bob Cook-Deegan

Arizona State University (ASU) - School for the Future of Innovation in Society

Richard Durbin

University of Cambridge - Department of Genetics

Carla Easter

National Institutes of Health (NIH) - National Human Genome Research Institute

Melissa Goldstein

George Washington University - Milken Institute School of Public Health

Debra J.H. Mathews

Johns Hopkins University - Berman Institute of Bioethics

Ann McCartney

National Institutes of Health (NIH) - National Human Genome Research Institute

Henry T. Greely

Stanford Law School

Date Written: March 25, 2021

Abstract

The Earth BioGenome Project (EBP) is an audacious endeavor to obtain whole genome sequences of representatives from all eukaryotic species on earth. In addition to the Project’s technical and organizational challenges, it also faces complicated ethical, legal, and social issues. This paper, from members of the EBP’s Ethical, Legal, and Social Issues (ELSI) Committee, catalogs these ELSI concerns arising from EBP. While we do not— and cannot—provide simple, overarching solutions for all of the issues raised here, we conclude our Perspective by beginning to chart a path forward for EBP’s work.

Keywords: genomics, ELSI, EBP, ABS, biodiversity

Suggested Citation: Suggested Citation

Sherkow, Jacob S. and Barker, Katharine and Braverman, Irus and Cook-Deegan, Robert M and Durbin, Richard and Easter, Carla and Goldstein, Melissa and Hudson, Maui and Kress, W. John and Lewin, Harris and Mathews, Debra J.H. and McCarthy, Catherine and McCartney, Ann and da Silva, Manuela and Torrance, Andrew W. and Greely, Henry (Hank) T., Ethical, Legal, and Social Issues in the Earth BioGenome Project (March 25, 2021). University of Illinois College of Law Legal Studies Research Paper No. 21-10, University at Buffalo School of Law Legal Studies Research Paper No. 2020-013, Available at SSRN: https://ssrn.com/abstract=3840280 or http://dx.doi.org/10.2139/ssrn.3840280