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

Authors

Jacob S. Sherkow, College of Law, University of Illinois at Urbana–Champaign
Katharine B. Barker, National Museum of Natural History, Smithsonian Institution
Irus Braverman, University at Buffalo School of LawFollow
Robert Cook-Deegan, College of Global Futures, Arizona State University
Richard Durbin, University of Cambridge
Carla L. Easter, National Human Genome Research Institute
Melissa M. Goldstein, Milken Institute School of Public Health, George Washington University
Maui Hudson, Te Kotahi Research Institute, University of Waikato
W. John Kress, Harvard University
Harris A. Lewin, College of Biological Sciences, University of California
Debra J. H. Mathews, Berman Institute of Bioethics, Johns Hopkins University
Catherine McCarthy, Yale Law School (Student)
Ann M. McCartney, National Human Genomics Research Institute
Manuela da Silva, Fiocruz Covid-19 Biobank, Fundação Oswaldo Cruz
Andrew W. Torrance, School of Law, University of Kansas
Henry T. Greely, Stanford Law School

Document Type

Article

Publication Date

1-18-2022

Rights

This work is licensed under a Creative Commons Attribution 4.0 International License.

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. These include legal issues, such as sample collection and permitting; the applicability of international treaties, such as the Convention on Biological Diversity and the Nagoya Protocol; intellectual property; sample accessioning; and biosecurity and ethical issues, such as sampling from the territories of Indigenous peoples and local communities, the protection of endangered species, and cross-border collections, among several others. We also comment on the intersection of digital sequence information and data rights. More broadly, this list of ethical, legal, and social issues for large-scale genomic sequencing projects may be useful in the consideration of ethical frameworks for future projects. While we do not—and cannot—provide simple, overarching solutions for all the issues raised here, we conclude our perspective by beginning to chart a path forward for EBP’s work.

DOI

10.1073/pnas.2115859119

Publication Title

PNAS

First Page

e2115859119

Recommended Citation

Jacob S. Sherkow, Katharine B. Barker, Irus Braverman, Robert Cook-Deegan, Richard Durbin, Carla L. Easter, Melissa M. Goldstein, Maui Hudson, W. J. Kress, Harris A. Lewin, Debra J. Mathews, Catherine McCarthy, Ann M. McCartney, Manuela da Silva, Andrew W. Torrance & Henry T. Greely, Ethical, Legal, and Social Issues in the Earth BioGenome Project, 119 PNAS e2115859119 (2022).
Available at: https://digitalcommons.law.buffalo.edu/journal_articles/1138