Cell Genomics (Oct 2023)
Equity, diversity, and inclusion at the Global Alliance for Genomics and Health
- Neerjah Skantharajah,
- Shakuntala Baichoo,
- Tiffany F. Boughtwood,
- Esmeralda Casas-Silva,
- Subhashini Chandrasekharan,
- Sanjay M. Dave,
- Khalid A. Fakhro,
- Aida B. Falcon de Vargas,
- Sylvia S. Gayle,
- Vivek K. Gupta,
- Rachele Hendricks-Sturrup,
- Ashley E. Hobb,
- Stephanie Li,
- Bastien Llamas,
- Catalina Lopez-Correa,
- Mavis Machirori,
- Jorge Melendez-Zajgla,
- Mareike A. Millner,
- Angela J.H. Page,
- Laura D. Paglione,
- Maili C. Raven-Adams,
- Lindsay Smith,
- Ericka M. Thomas,
- Judit Kumuthini,
- Manuel Corpas
Affiliations
- Neerjah Skantharajah
- Ontario Institute for Cancer Research, Toronto, ON, Canada; Global Alliance for Genomics and Health, Toronto, ON, Canada
- Shakuntala Baichoo
- University of Mauritius, Reduit, Mauritius
- Tiffany F. Boughtwood
- Australian Genomics, Parkville, VIC, Australia; Murdoch Children’s Research Institute, Parkville, VIC, Australia
- Esmeralda Casas-Silva
- National Cancer Institute, Rockville, MD, USA
- Subhashini Chandrasekharan
- The All of Us Research Program, National Institutes of Health, Bethesda, MD, USA
- Sanjay M. Dave
- Department of Biotechnology, Hemchandracharya North Gujarat University, Patan, Gujarat, India
- Khalid A. Fakhro
- Department of Human Genetics, Sidra Medicine, Doha, Qatar; Department of Genetic Medicine, Weill Cornell Medical College, Doha, Qatar
- Aida B. Falcon de Vargas
- Hospital Vargas de Caracas, Vargas Medical School, Universidad Central de Venezuela, Caracas, Venezuela; Hospital de Clínicas Caracas, Caracas, Venezuela
- Sylvia S. Gayle
- National Cancer Institute, Rockville, MD, USA
- Vivek K. Gupta
- Macquarie Medical School, Faculty of Medicine, Health and Human Sciences, Macquarie University, Sydney, NSW, Australia
- Rachele Hendricks-Sturrup
- Duke-Margolis Center for Health Policy, Washington, DC, USA
- Ashley E. Hobb
- DNAstack, Toronto, ON, Canada
- Stephanie Li
- Global Alliance for Genomics and Health, Toronto, ON, Canada; Broad Institute, Cambridge, MA, USA
- Bastien Llamas
- Australian Centre for Ancient DNA, School of Biological Sciences and The Environment Institute, University of Adelaide, Adelaide, SA, Australia; ARC Centre of Excellence for Australian Biodiversity and Heritage, University of Adelaide, Adelaide, SA, Australia; National Centre for Indigenous Genomics, John Curtin School of Medical Research, Australian National University, Canberra, ACT, Australia; Indigenous Genomics, Telethon Kids Institute, Adelaide, SA, Australia
- Catalina Lopez-Correa
- Genome Canada, Ottawa, ON, Canada
- Mavis Machirori
- Ada Lovelace Institute, London, UK; PEALS, Newcastle University, Newcastle Upon Tyne, UK
- Jorge Melendez-Zajgla
- Instituto Nacional de Medicina Genomica, Mexico City, Mexico
- Mareike A. Millner
- Maastricht University, Health Law and Governance Group, Maastricht, the Netherlands
- Angela J.H. Page
- Global Alliance for Genomics and Health, Toronto, ON, Canada; Broad Institute, Cambridge, MA, USA
- Laura D. Paglione
- Spherical Cow Group, New York, NY, USA; Laura Paglione LLC, New York, NY, USA
- Maili C. Raven-Adams
- Global Alliance for Genomics and Health, Toronto, ON, Canada; Wellcome Sanger Institute, Hinxton, UK
- Lindsay Smith
- Ontario Institute for Cancer Research, Toronto, ON, Canada; Global Alliance for Genomics and Health, Toronto, ON, Canada
- Ericka M. Thomas
- The All of Us Research Program, National Institutes of Health, Bethesda, MD, USA
- Judit Kumuthini
- South African National Bioinformatics Institute, University of Western Cape, Cape Town, South Africa
- Manuel Corpas
- School of Life Sciences, University of Westminster, London, UK; Corresponding author
- Journal volume & issue
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Vol. 3,
no. 10
p. 100386
Abstract
Summary: A lack of diversity in genomics for health continues to hinder equitable leadership and access to precision medicine approaches for underrepresented populations. To avoid perpetuating biases within the genomics workforce and genomic data collection practices, equity, diversity, and inclusion (EDI) must be addressed. This paper documents the journey taken by the Global Alliance for Genomics and Health (a genomics-based standard-setting and policy-framing organization) to create a more equitable, diverse, and inclusive environment for its standards and members. Initial steps include the creation of two groups: the Equity, Diversity, and Inclusion Advisory Group and the Regulatory and Ethics Diversity Group. Following a framework that we call “Reflected in our Teams, Reflected in our Standards,” both groups address EDI at different stages in their policy development process.