Ethical, legal, and social issues in the Earth BioGenome Project

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

doi:10.1073/pnas.2115859119

Ethical, legal, and social issues in the Earth BioGenome Project

Proc Natl Acad Sci U S A. 2022 Jan 25;119(4):e2115859119. doi: 10.1073/pnas.2115859119.

Authors

Jacob S Sherkow^{1

2

3}, Katharine B Barker⁴, Irus Braverman⁵, Robert Cook-Deegan⁶, Richard Durbin^{7

8}, Carla L Easter⁹, Melissa M Goldstein¹⁰, Maui Hudson^{11

12}, W John Kress^{13

14}, Harris A Lewin^{15

16}, Debra J H Mathews^{17

18}, Catherine McCarthy⁸, Ann M McCartney¹⁹, Manuela da Silva²⁰, Andrew W Torrance²¹, Henry T Greely^{22

23}

Affiliations

¹ College of Law, University of Illinois at Urbana-Champaign, Champaign, IL 61820; jsherkow@illinois.edu.
² Carl R. Woese Institute for Genomic Biology, University of Illinois at Urbana-Champaign, Urbana, IL 61801.
³ Center for Advanced Studies in Biomedical Innovation Law, University of Copenhagen Faculty of Law DK-2300 Copenhagen S, Denmark.
⁴ Global Genome Initiative and Global Genome Biodiversity Network, National Museum of Natural History, Smithsonian Institution, Washington, DC 20560.
⁵ University at Buffalo School of Law, The State University of New York at Buffalo, Buffalo, NY 14260.
⁶ School for the Future of Innovation in Society and Consortium for Science, Policy & Outcomes, College of Global Futures, Arizona State University, Washington, DC 20006.
⁷ Department of Genetics, University of Cambridge, Cambridge CB2 3EH, United Kingdom.
⁸ Wellcome Sanger Institute, Hinxton CB10 1SA, United Kingdom.
⁹ Education and Community Involvement Branch, National Human Genome Research Institute, Bethesda, MD 20892.
¹⁰ Department of Health Policy and Management, Milken Institute School of Public Health, George Washington University, Washington, DC 20052.
¹¹ Te Kotahi Research Institute, University of Waikato, Hamilton 3216, New Zealand.
¹² Genomics Aotearoa, University of Otago, Dunedin 9016, New Zealand.
¹³ The Arnold Arboretum, Harvard University, Jamaica Plain, MA 02130.
¹⁴ Department of Botany, National Museum of Natural History, Smithsonian Institution, Washington, DC 20560.
¹⁵ Department of Evolution and Ecology, College of Biological Sciences, University of California, Davis, CA 95616.
¹⁶ Department of Population Health and Reproduction, University of California, Davis, CA 95616.
¹⁷ Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD 21205.
¹⁸ Department of Genetic Medicine, Johns Hopkins University School of Medicine, Baltimore, MD 21205.
¹⁹ Genome Informatics Section, National Human Genomics Research Institute, Bethesda, MD 20892.
²⁰ Fiocruz Covid-19 Biobank, Fundação Oswaldo Cruz, Rio de Janeiro 21041-361, Brazil.
²¹ School of Law, University of Kansas, Lawrence, KS 66045.
²² Center for Law and the Biosciences, Stanford Law School, Stanford University, Stanford, CA 94305.
²³ Department of Genetics, School of Medicine, Stanford University, Stanford, CA 94305.

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.

Keywords: EBP; ELSI; biodiversity; ethics; genomics.

MeSH terms

Animals
Biosecurity / ethics
Biosecurity / legislation & jurisprudence
Endangered Species / legislation & jurisprudence*
Ethics, Research*
Genomics* / ethics
Genomics* / legislation & jurisprudence
Humans

Grants and funding

207492/Z/17/Z/WT_/Wellcome Trust/United Kingdom