Center for Medical Ethics and Health Policy Staff Publications

Publication Date

1-1-2023

Journal

AJOB Empirical Bioethics

DOI

10.1080/23294515.2023.2201478

PMID

37126431

PMCID

PMC10615663

PubMedCentral® Posted Date

5-1-2024

PubMedCentral® Full Text Version

Author MSS

Abstract

Background: In the wake of mandates for biomedical research to increase participation by members of historically underrepresented populations, community engagement (CE) has emerged as a key intervention to help achieve this goal.

Methods: Using interviews, observations, and document analysis, we examine how stakeholders in precision medicine research understand and seek to put into practice ideas about who to engage, how engagement should be conducted, and what engagement is for.

Results: We find that ad hoc, opportunistic, and instrumental approaches to CE exacted significant consequences for the time and resources devoted to engagement and the ultimate impacts it has on research. Critical differences emerged when engagement and research decisionmaking were integrated with each other versus occurring in parallel, separate parts of the study organization, and whether community members had the ability to determine which issues would be brought to them for consideration or to revise or even veto proposals made upstream based on criteria that mattered to them. CE was understood to have a range of purposes, from instrumentally facilitating recruitment and data collection, to advancing community priorities and concerns, to furthering long-term investments in relationships with and changes in communities. These choices about who to engage, what engagement activities to support, how to solicit and integrate community input into the workflow of the study, and what CE was for were often conditioned upon preexisting perceptions and upstream decisions about study goals, competing priorities, and resource availability.

Conclusions: Upstream choices about CE and constraints of time and resources cascade into tradeoffs that often culminated in "pantomime community engagement." This approach can create downstream costs when engagement is experienced as improvised and sporadic. Transformations are needed for CE to be seen as a necessary scientific investment and part of the scientific process.

Keywords

Humans, Community Participation, Precision Medicine, Community-Based Participatory Research, Biomedical Research, Data Collection, Community engagement, bioethics, diversity and inclusion, precision medicine, qualitative research, research participation

Published Open-Access

yes

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