Community-Based Participatory Research and its Potential Role in Supporting Diversity in Genomic Science

• Published in: Journal of health care for the poor and underserved Vol. 32; no. 3; pp. 1208 - 1224
• Main Authors: May, Thomas, Bogar, Sandra, Spellecy, Ryan, Kabasenche, William, Craig, Jana, Dick, Danielle
• Format: Journal Article
• Language: English
• Published: Baltimore Johns Hopkins University Press 01.08.2021
• Subjects: African Americans; Community based action research; Community involvement; Community participation; Consent; Genetic engineering; Genomics; Health risk assessment; Informed consent; Marginalized groups; Medical ethics; Minority & ethnic groups; Multiculturalism & pluralism; Participation; Participatory research; Trustworthiness; Workforce; United States > US

Objectives. This paper seeks to understand why targeted efforts to recruit subjects from underrepresented communities have failed to meaningfully increase diversity of genomic reference data. Approach. We review a variety of mechanisms that have attempted to establish trust with communities underrep...