Beyond inclusion: Enacting team equity in precision medicine research

• Published in: PloS one 2022-02, Vol.17 (2), p.e0263750-e0263750
• Main Authors: Jeske, Melanie, Vasquez, Emily, Fullerton, Stephanie M, Saperstein, Aliya, Bentz, Michael, Foti, Nicole, Shim, Janet K, Lee, Sandra Soo-Jin
• Format: Article
• Language: English
• Subjects: Adolescent; Adult; Aged; Behavioral sciences; Biology and Life Sciences; Biomedical research; Biomedical Research - ethics; Consortia; COVID-19; Cultural Diversity; Diversification; Ecology and Environmental Sciences; Ethics; Evaluation; Female; Funding; Genetics; Genomics; Genomics - ethics; Health Workforce - ethics; Hierarchies; Humanities; Humans; Interviews; Laboratory Personnel - ethics; Laboratory Personnel - organization & administration; Male; Management; Medical personnel; Medicine; Medicine and Health Sciences; Meetings; Middle Aged; Multiculturalism & pluralism; Patient Care Team - ethics; Patient Care Team - organization & administration; Precision medicine; Precision Medicine - ethics; Racism; Science Policy; Social Sciences; Sociology; Teams; United States; Workforce; Workplace diversity; Workplace multiculturalism; Young Adult
• ISSN: 1932-6203; 1932-6203
• DOI: 10.1371/journal.pone.0263750

To identify meanings of and challenges to enacting equitable diversification of genomics research, and specifically precision medicine research (PMR), teams. We conducted in-depth interviews with 102 individuals involved in three U.S.-based precision medicine research consortia and conducted over 400 observation hours of their working group meetings, consortium-wide meetings, and conference presentations. We also reviewed published reports on genomic workforce diversity (WFD), particularly those relevant to the PMR community. Our study finds that many PMR teams encounter challenges as they strive to achieve equitable diversification on scientific teams. Interviewees articulated that underrepresented team members were often hired to increase the study's capacity to recruit diverse research participants, but are limited to on-the-ground staff positions with little influence over study design. We find existing hierarchies and power structures in the academic research ecosystem compound challenges for equitable diversification. Our results suggest that meaningful diversification of PMR teams will only be possible when team equity is prioritized as a core value in academic research communities.