A Proposal for Addressing Bioethical Concerns Along the 10-Step Framework for Community Engagement

Introduction

Building trust by applying an ethical deliberation approach can increase Black/African American participation in clinical and translational community-engaged research (CEnR).

Materials and Methods

We provide examples of case studies from the literature to identify ethical issues associated with each step of the 10-Step Framework. To address these ethical issues, we applied an ethical deliberation approach embodied in three moments: (1) broadening and deepening the understanding of the situation and/or research scenarios, (2) envisioning action scenarios for more trustworthy research, and (3) coming to a judgement based on the comparative evaluation of scenarios.

Results

Examples of ethical issues identified include a lack of shared decision-making on proposed research topics, lengthy periods for data analysis and reporting that frustrate partners who want more timely results, and the lack of privacy, confidentiality and non-compliance with consent permissions for the dissemination of results.

Conclusion

We recommend tailoring the ethical deliberation approach to any project dealing with ethical issues and conducting empirical studies to test this approach in CEnR.

Patient or Public Contribution

As part of a community-engaged research (CEnR) project, this paper benefited from the contribution of F.L., a member of a community organisation, as a co-author. This author was actively involved in contributing to the review of ethical issues in community-engaged research and how the ethical deliberation approach can contribute to addressing these ethical issues.