Medical College of Wisconsin
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Community-Based Participatory Research and its Potential Role in Supporting Diversity in Genomic Science. J Health Care Poor Underserved 2021;32(3):1208-1224

Date

08/24/2021

Pubmed ID

34421026

DOI

10.1353/hpu.2021.0127

Scopus ID

2-s2.0-85114422875 (requires institutional sign-in at Scopus site)   5 Citations

Abstract

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 underrepresented in genomic research, including sophisticated informed consent, broad consent, community consultation, and initiatives designed to diversify the scientific workforce. We also analyze the ability of deep community engagement of the type advanced by community-based participatory research (CBPR) to address deficiencies in previous strategies to build trust.

CONCLUSION AND RECOMMENDATION: Previous strategies to build trust do not fully address key concerns related to the foundational aims and projects of scientific inquiry. The techniques of CBPR are well suited to address these concerns and thus build trust. Community engagement strategies show tremendous promise in supporting participation of underrepresented communities in genomic research.

Author List

May T, Bogar S, Spellecy R, Kabasenche W, Craig J, Dick D

Author

Ryan Spellecy PhD Assistant Provost, Director, Professor in the Institute for Health and Equity department at Medical College of Wisconsin




MESH terms used to index this publication - Major topics in bold

Community-Based Participatory Research
Genomics
Humans
Trust