Skantharajah Neerjah, Baichoo Shakuntala, Boughtwood Tiffany F, Casas-Silva Esmeralda, Chandrasekharan Subhashini, Dave Sanjay M, Fakhro Khalid A, Falcon de Vargas Aida B, Gayle Sylvia S, Gupta Vivek K, Hendricks-Sturrup Rachele, Hobb Ashley E, Li Stephanie, Llamas Bastien, Lopez-Correa Catalina, Machirori Mavis, Melendez-Zajgla Jorge, Millner Mareike A, Page Angela J H, Paglione Laura D, Raven-Adams Maili C, Smith Lindsay, Thomas Ericka M, Kumuthini Judit, Corpas Manuel
Ontario Institute for Cancer Research, Toronto, ON, Canada.
Global Alliance for Genomics and Health, Toronto, ON, Canada.
Cell Genom. 2023 Aug 24;3(10):100386. doi: 10.1016/j.xgen.2023.100386. eCollection 2023 Oct 11.
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.
健康基因组学缺乏多样性,这继续阻碍着弱势群体在精准医疗方法方面获得公平的领导力和机会。为避免基因组学领域从业人员和基因组数据收集实践中持续存在偏见,必须解决公平、多样性和包容性(EDI)问题。本文记录了全球基因组学与健康联盟(一个基于基因组学的标准制定和政策框架组织)为其标准和成员创造更公平、多样和包容环境所采取的历程。初步措施包括成立两个小组:公平、多样性和包容性咨询小组以及监管与伦理多样性小组。遵循我们称之为“体现在团队中,体现在标准中”的框架,两个小组在其政策制定过程的不同阶段处理EDI问题。