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

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...

Full description

Saved in:
Bibliographic Details
Published inJournal 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
LanguageEnglish
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
Online AccessGet full text

Cover

More Information
Summary: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.
Bibliography:ObjectType-Article-1
SourceType-Scholarly Journals-1
ObjectType-Feature-2
content type line 14
ObjectType-Review-3
content type line 23
ISSN:1049-2089
1548-6869
1548-6869
DOI:10.1353/hpu.2021.0127