TY - JOUR
T1 - Ethical, legal, and social issues in the Earth BioGenome Project
AU - Sherkow, Jacob S.
AU - Barker, Katharine B.
AU - Braverman, Irus
AU - Cook-Deegan, Robert
AU - Durbin, Richard
AU - Easter, Carla L.
AU - Goldstein, Melissa M.
AU - Hudson, Maui
AU - Kress, W. John
AU - Lewin, Harris A.
AU - Mathews, Debra J.H.
AU - McCarthy, Catherine
AU - McCartney, Ann M.
AU - da Silva, Manuela
AU - Torrance, Andrew W.
AU - Greely, Henry T.
N1 - Publisher Copyright:
© 2022 National Academy of Sciences. All rights reserved.
PY - 2022/1/25
Y1 - 2022/1/25
N2 - 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.
AB - 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.
KW - Biodiversity
KW - EBP
KW - ELSI
KW - Ethics
KW - Genomics
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U2 - 10.1073/pnas.2115859119
DO - 10.1073/pnas.2115859119
M3 - Article
C2 - 35042809
AN - SCOPUS:85123082892
SN - 0027-8424
VL - 119
JO - Proceedings of the National Academy of Sciences of the United States of America
JF - Proceedings of the National Academy of Sciences of the United States of America
IS - 4
M1 - e2115859119
ER -