Dataset Information

Equity, diversity, and inclusion at the Global Alliance for Genomics and Health.

ABSTRACT: 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.

SUBMITTER: Skantharajah N

PROVIDER: S-EPMC10589617 | biostudies-literature | 2023 Oct

REPOSITORIES: biostudies-literature

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Equity, diversity, and inclusion at the Global Alliance for Genomics and Health.

Skantharajah Neerjah N Baichoo Shakuntala S Boughtwood Tiffany F TF Casas-Silva Esmeralda E Chandrasekharan Subhashini S Dave Sanjay M SM Fakhro Khalid A KA Falcon de Vargas Aida B AB Gayle Sylvia S SS Gupta Vivek K VK Hendricks-Sturrup Rachele R Hobb Ashley E AE Li Stephanie S Llamas Bastien B Lopez-Correa Catalina C Machirori Mavis M Melendez-Zajgla Jorge J Millner Mareike A MA Page Angela J H AJH Paglione Laura D LD Raven-Adams Maili C MC Smith Lindsay L Thomas Ericka M EM Kumuthini Judit J Corpas Manuel M

Cell genomics 20230824 10

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, ...[more]

PMID: 37868041

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Project description:ObjectiveTo describe the perception of professional climate in health services and policy research (HSPR) and efforts to advance diversity, equity, and inclusion (DEI) in the HSPR workforce and workplaces.Data sourceWe administered the HSPR Workplace Culture Survey online to health services and policy researchers.Study designOur survey examined participants' sociodemographic, educational, and professional backgrounds, their perception on DEI in HSPR, experience with DEI initiatives, feeling of inclusion, and direct and witnessed experiences of discrimination at their institutions/organizations. We calculated sample proportions of responses by gender identity, sexual orientation, race/ethnicity, and disability status and compared them with Fisher's exact test.Data collectionWe administered the survey online from July 28 to September 4, 2020. HSPR professionals and trainees aged 18 and older were eligible to participate. Analyses used complete cases only (n = 906; 70.6% completion rate).Principal findings53.4% of the participants did not believe that the current workforce reflects the diversity of communities impacted by HSPR. Although most participants have witnessed various DEI initiatives at their institutions/organizations, nearly 40% characterized these initiatives as "tokenistic." Larger proportions of participants who identified as female, LGBQI+, underrepresented racial/ethnic groups, and those with a disability held this perception than their male, heterosexual, White, and non-disabled counterparts. Current DEI initiatives focused on "planning" activities (e.g., convening task forces) rather than "implementation" activities (e.g., establishing mentoring or network programs). 43.7% of the participants felt supported on their career development, while female, Black, Hispanic/Latino, LGBQI+ participants and those with a disability experienced discrimination at their workplace.ConclusionsDespite an increasing commitment to increasing the diversity of the HSPR workforce and improving equity and inclusion in the HSPR workplace, our results suggest that there is more work to be done to achieve such goals.

Dataset Information

Equity, diversity, and inclusion at the Global Alliance for Genomics and Health.

Publications

Equity, diversity, and inclusion at the Global Alliance for Genomics and Health.

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