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Balancing openness with Indigenous data sovereignty: An opportunity to leave no one behind in the journey to sequence all of life.
Mc Cartney, Ann M; Anderson, Jane; Liggins, Libby; Hudson, Maui L; Anderson, Matthew Z; TeAika, Ben; Geary, Janis; Cook-Deegan, Robert; Patel, Hardip R; Phillippy, Adam M.
Affiliation
  • Mc Cartney AM; Genome Informatics Section, Computational and Statistical Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD 20892; ann.mccartney@nih.gov.
  • Anderson J; Engelberg Center for Innovation Law and Policy, New York University School of Law, New York, NY 10012.
  • Liggins L; School of Natural and Computational Sciences, Massey University, 0745 Auckland, New Zealand.
  • Hudson ML; Te Kotahi Research Institute, University of Waikato, 3216 Hamilton, New Zealand.
  • Anderson MZ; Department of Microbiology, The Ohio State University, Columbus, OH 43210.
  • TeAika B; Department of Microbial Infection and Immunity, The Ohio State University, Columbus, OH 43210.
  • Geary J; Genomics Aotearoa, University of Otago, 9016 Dunedin, New Zealand.
  • Cook-Deegan R; School for the Future of Innovation in Society, Arizona State University, Tempe, AZ 85281.
  • Patel HR; School for the Future of Innovation in Society, Arizona State University, Tempe, AZ 85281.
  • Phillippy AM; The National Centre of Indigenous Genomics, The Australian National University, Canberra, ACT 0200, Australia.
Proc Natl Acad Sci U S A ; 119(4)2022 01 25.
Article in En | MEDLINE | ID: mdl-35042810
ABSTRACT
The field of genomics has benefited greatly from its "openness" approach to data sharing. However, with the increasing volume of sequence information being created and stored and the growing number of international genomics efforts, the equity of openness is under question. The United Nations Convention of Biodiversity aims to develop and adopt a standard policy on access and benefit-sharing for sequence information across signatory parties. This standardization will have profound implications on genomics research, requiring a new definition of open data sharing. The redefinition of openness is not unwarranted, as its limitations have unintentionally introduced barriers of engagement to some, including Indigenous Peoples. This commentary provides an insight into the key challenges of openness faced by the researchers who aspire to protect and conserve global biodiversity, including Indigenous flora and fauna, and presents immediate, practical solutions that, if implemented, will equip the genomics community with both the diversity and inclusivity required to respectfully protect global biodiversity.
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Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Information Dissemination / Indigenous Peoples Limits: Humans Language: En Journal: Proc Natl Acad Sci U S A Year: 2022 Type: Article

Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Information Dissemination / Indigenous Peoples Limits: Humans Language: En Journal: Proc Natl Acad Sci U S A Year: 2022 Type: Article