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 M.; Hudson, Māui; Kress, W. John; Lewin, Harris A.; Mathews, Debra J. H.; McCarthy, Catherine; McCartney, Ann; Silva, Manuela da; Torrance, Andrew W.; Greely, Henry T.

doi:10.2139/ssrn.3840280

Cited by 4 publications

(5 citation statements)

References 18 publications

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“…In reality, in-depth monitoring can inflict unacceptable damage on fragile ecosystems, illustrating the need for careful study design, and technology that minimizes harm. Any project so broad in scope raises complicated ethical, legal, and social issues that must be carefully addressed ( 144 ). The potential for discovery in such rich datasets, extending far beyond genomics, encapsulates the vision of a more extensive, inclusive, Darwinian approach to genomics.…”

Section: Discussionmentioning

confidence: 99%

Darwinian genomics and diversity in the tree of life

Stephan

Burgess

Cheng

et al. 2022

Proc. Natl. Acad. Sci. U.S.A.

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Genomics encompasses the entire tree of life, both extinct and extant, and the evolutionary processes that shape this diversity. To date, genomic research has focused on humans, a small number of agricultural species, and established laboratory models. Fewer than 18,000 of ∼2,000,000 eukaryotic species (<1%) have a representative genome sequence in GenBank, and only a fraction of these have ancillary information on genome structure, genetic variation, gene expression, epigenetic modifications, and population diversity. This imbalance reflects a perception that human studies are paramount in disease research. Yet understanding how genomes work, and how genetic variation shapes phenotypes, requires a broad view that embraces the vast diversity of life. We have the technology to collect massive and exquisitely detailed datasets about the world, but expertise is siloed into distinct fields. A new approach, integrating comparative genomics with cell and evolutionary biology, ecology, archaeology, anthropology, and conservation biology, is essential for understanding and protecting ourselves and our world. Here, we describe potential for scientific discovery when comparative genomics works in close collaboration with a broad range of fields as well as the technical, scientific, and social constraints that must be addressed.

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Section: Discussionmentioning

confidence: 99%

Darwinian genomics and diversity in the tree of life

Stephan

Burgess

Cheng

et al. 2022

Proc. Natl. Acad. Sci. U.S.A.

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“…To accomplish these goals, the EBP was established as an international network-of-networks: organizations that specialize in sample acquisition and vouchering; technology centers for sequencing, assembly, and annotation; and affiliated projects with deep expertise with specific taxonomic groups, biomes, and ecosystems ( Box 1 ). In addition, the EBP develops ethical standards for project participation, data sharing, access and benefit sharing of intellectual property derived from whole-genome sequencing [see Sherkow et al., this issue ( 15 )], and promotes programs for diversity, equity, inclusion, and justice among the project’s participants. The EBP Member Institutions and Affiliated Projects are committed to open data access and compliance with the principles of Access and Benefits Sharing under the Convention on Biological Diversity and the Nagoya Protocol ( 16 ).…”

Section: Organization and Governancementioning

confidence: 99%

“…The EBP’s Committee on Ethical, Legal, and Social Issues (ELSI), established in 2020, makes recommendations to the EBP Working Group on legal obligations relating to the Nagoya Protocol on Access and Benefit Sharing; ethical considerations relating to collection of samples, societal concerns, and biosecurity; and collaboration standards (e.g., sample information, digital sequence information, intellectual property, authorship and publication guidelines). The committee’s outline of the ELSI issues facing the EBP can be found in this issue ( 15 ). A Committee on Diversity, Equity, Inclusion, and Justice (DEIJ) was approved recently by the EBP Working Group.…”

Section: Organization and Governancementioning

confidence: 99%

The Earth BioGenome Project 2020: Starting the clock

Lewin

Richards

Aiden

et al. 2022

Proc. Natl. Acad. Sci. U.S.A.

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180

107

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“…Therefore, the recognition, inclusion, participation of IPLCs and the fair and equitable distribution of bene ts are of crucial importance to the success of the biodiversity genomics research community. There is a fraught history of IPLC samples and aTK being unethically accessed, utilized and Intellectual Property (IP) rights being used to appropriate the value of genetic resources without the appropriate consent or the equitable sharing of bene ts 28,29,30,31 . Research carried on genetic resources and the associated data can result in inventions that could be eligible for IP protection, and negotiating and granting access to genetic resources for research or commercial uses could also raise IP questions 31,32 .…”

Section: Introductionmentioning

confidence: 99%

“…There is a fraught history of IPLC samples and aTK being unethically accessed, utilized and Intellectual Property (IP) rights being used to appropriate the value of genetic resources without the appropriate consent or the equitable sharing of bene ts 28,29,30,31 . Research carried on genetic resources and the associated data can result in inventions that could be eligible for IP protection, and negotiating and granting access to genetic resources for research or commercial uses could also raise IP questions 31,32 . Many international fora [33][34][35][36] , including the Convention on Biological Diversity's Nagoya Protocol 16 , codify fair and equitable bene t-sharing from the access and use of genetic resources for the purposes of research and development when partnering with IPLCs.…”

Section: Introductionmentioning

confidence: 99%

Indigenous Peoples and Local Communities as partners in the sequencing of all eukaryotic life for the future of life

Cartney¹,

Tsosie²,

Sterner

et al. 2022

Preprint

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The aim to sequence, catalog, and characterize the genomes of all of Earth’s eukaryotic biodiversity is the shared mission of many ongoing large scale biodiversity genomics initiatives. Reference genomes of our global flora and fauna have the potential to inform a broad range of major issues facing both biodiversity and humanity, such as the impact of climate change, the conservation of endangered species and ecosystems, public health crises, and the preservation and enhancement of ecosystem services. Biodiversity is dramatically declining: 28% of species being assessed by IUCN are threatened with extinction and recent reports suggest that a transformative change is needed to conserve and protect what remains. To provide a collective and global genomic response to the biodiversity crisis, many biodiversity genomics initiatives have come together, creating a network of networks under the Earth BioGenome Project. This network seeks to expedite the creation of an openly available, “public good” encyclopedia of high-quality eukaryotic reference genomes, in hope that by advancing our basic understanding of nature it can lead to the transformational scientific developments needed to conserve and protect global biodiversity. Key to completing this ambitious encyclopedia of reference genomes, is the ability to responsibly, ethically, legally, and equitably access and use samples from all of the eukaryotic species across the planet, including those that are under the custodianship of Indigenous Peoples and Local Communities. Here, the biodiversity genomics community is subject to the provisions codified in international, national, and local legislations but also customary community policies and protocols. We propose a framework to support biodiversity genomic researchers, projects, and initiatives in building trustworthy and sustainable partnerships with communities, providing minimum recommendations on how to access, utilize, preserve, handle, share, analyze and communicate samples, genomics data and associated Traditional Knowledge obtained from, and in partnership with, Indigenous Peoples and Local Communities across the data-lifecycle.

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

Cited by 4 publications

References 18 publications

Darwinian genomics and diversity in the tree of life

Darwinian genomics and diversity in the tree of life

The Earth BioGenome Project 2020: Starting the clock

Indigenous Peoples and Local Communities as partners in the sequencing of all eukaryotic life for the future of life

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