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

被引：8

作者：

Sherkow, Jacob S. ^{[1
,2
,3
]}

Barker, Katharine B. ^{[4
]}

Braverman, Irus ^{[5
]}

Cook-Deegan, Robert ^{[6
]}

Durbin, Richard ^{[7
,8
]}

Easter, Carla L. ^{[9
]}

Goldstein, Melissa M. ^{[10
]}

Hudson, Maui ^{[11
,12
]}

Kress, W. John ^{[13
,14
]}

Lewin, Harris A. ^{[15
,16
]}

Mathews, Debra J. H. ^{[17
,18
]}

McCarthy, Catherine ^{[8
]}

McCartney, Ann M. ^{[19
]}

da Silva, Manuela ^{[20
]}

Torrance, Andrew W. ^{[21
]}

Greely, Henry T. ^{[22
,23
]}

机构：

[1] Univ Illinois, Coll Law, Champaign, IL 61820 USA

[2] Univ Illinois, Carl R Woese Inst Genom Biol, Urbana, IL 61801 USA

[3] Univ Copenhagen, Fac Law, Ctr Adv Studies Biomed Innovat Law, DK-2300 Copenhagen S, Denmark

[4] Smithsonian Inst, Natl Museum Nat Hist, Global Genome Initiat & Global Genome Biodivers N, Washington, DC 20560 USA

[5] SUNY Buffalo, Sch Law, Buffalo, NY 14260 USA

[6] Arizona State Univ, Coll Global Futures, Sch Future Innovat Soc & Consortium Sci Policy &, Washington, DC 20006 USA

[7] Univ Cambridge, Dept Genet, Cambridge CB2 3EH, England

[8] Wellcome Sanger Inst, Hinxton CB10 1SA, England

[9] NHGRI, Educ & Community Involvement Branch, Bethesda, MD 20892 USA

[10] George Washington Univ, Milken Inst Sch Publ Hlth, Dept Hlth Policy & Management, Washington, DC 20052 USA

[11] Univ Waikato, Te Kotahi Res Inst, Hamilton 3216, New Zealand

[12] Univ Otago, Genom Aotearoa, Dunedin 9016, New Zealand

[13] Harvard Univ, Arnold Arboretum, Jamaica Plain, MA 02130 USA

[14] Smithsonian Inst, Dept Bot, Natl Museum Nat Hist, Washington, DC 20560 USA

[15] Univ Calif Davis, Coll Biol Sci, Dept Evolut & Ecol, Davis, CA 95616 USA

[16] Univ Calif Davis, Dept Populat Hlth & Reprod, Davis, CA 95616 USA

[17] Johns Hopkins Univ, Berman Inst Bioeth, Baltimore, MD 21205 USA

[18] Johns Hopkins Univ, Sch Med, Dept Genet Med, Baltimore, MD 21205 USA

[19] NHGRI, Genome Informat Sect, Bethesda, MD 20892 USA

[20] Fundacao Oswaldo Cruz, Fiocruz Covid 19 Biobank, BR-21041361 Rio De Janeiro, Brazil

[21] Univ Kansas, Sch Law, Lawrence, KS 66045 USA

[22] Stanford Univ, Stanford Law Sch, Ctr Law & Biosci, Stanford, CA 94305 USA

[23] Stanford Univ, Sch Med, Dept Genet, Stanford, CA 94305 USA

来源：

PROCEEDINGS OF THE NATIONAL ACADEMY OF SCIENCES OF THE UNITED STATES OF AMERICA | 2022年 / 119卷 / 04期

关键词：

genomics; ELSI; EBP; ethics; biodiversity;

D O I：

10.1073/pnas.2115859119

中图分类号：

O [数理科学和化学]; P [天文学、地球科学]; Q [生物科学]; N [自然科学总论];

学科分类号：

07 ; 0710 ; 09 ;

摘要：

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.

引用

页数：7

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