Stakeholder-driven, consensus development methods to design an ethical framework and guidelines for engaged research

Increasingly, researchers seek to engage communities, patients, and stakeholders as partners in the process and products of health research. However, there is no existing stakeholder-driven ethical framework for such engaged scholarship. We employed an iterative, stakeholder-engaged method to develo...

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Bibliographic Details
Published in:PloS one 2018-06, Vol.13 (6), p.e0199451-e0199451
Main Authors: Corbie-Smith, Giselle, Wynn, Mysha, Richmond, Alan, Rennie, Stuart, Green, Melissa, Hoover, Stephanie M, Watson-Hopper, Sable, Nisbeth, Kyle Simone
Format: Article
Language:English
Subjects:
Analysis
Biology and Life Sciences
Community development
Consensus
Consensus (Social sciences)
Dynamic tests
Ethics
Ethics, Research
Fellowships and Scholarships - ethics
Guidelines as Topic
Human subjects
Medical research
Medicine
Medicine and Health Sciences
Methods
Practice guidelines (Medicine)
Principles
Public health
Research and Analysis Methods
Research design
Research methodology
Review boards
Science Policy
Social justice
Social Sciences
Stakeholder Participation
Stakeholders
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Summary:Increasingly, researchers seek to engage communities, patients, and stakeholders as partners in the process and products of health research. However, there is no existing stakeholder-driven ethical framework for such engaged scholarship. We employed an iterative, stakeholder-engaged method to develop a data-driven framework for the ethical review and conduct of engaged scholarship. We used consensus development conference methods and a modified Delphi survey to engage 240 community members, ethicists, and academic researchers. This multi-staged process produced a framework with 4 domains: vision of equitable and just research, relationship dynamics, community-informed risk/benefits assessment, and accountability. Within the framework, 4 cross-cutting considerations and 15 statements explicate the stakeholders' priorities for the ethical review and conduct of engaged scholarship. Though the findings are promising, the study is limited in that it focuses on stakeholder perspectives, but does not actually evaluate or apply the findings in the field. The stakeholder-engaged framework provides a platform for further articulation of ethical practices and policy for engaged scholarship.
ISSN:1932-6203
1932-6203
DOI:10.1371/journal.pone.0199451