Abstract
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.
Highlights
In both developed and ascending nations, there is growing interest in engaging communities, patients, and stakeholders as partners in the process and products of engaged scholarship [1]
Analyses that engage the ethical principles of respect, beneficence, and justice, as well as the frameworks that derive from them, were developed for traditional research contexts where investigator-initiated research is reviewed by institutional review boards (IRBs) at academic institutions, conducted in controlled settings, and where communities play a more passive role [10]
We present a framework for the ethical review and conduct of engaged scholarship
Summary
In both developed and ascending nations, there is growing interest in engaging communities, patients, and stakeholders as partners in the process and products of engaged scholarship [1]. Analyses that engage the ethical principles of respect, beneficence, and justice, as well as the frameworks that derive from them, were developed for traditional research contexts where investigator-initiated research is reviewed by institutional review boards (IRBs) at academic institutions, conducted in controlled settings, and where communities play a more passive role [10]. Though investigator expertise and scientific validity are important in all research, additional considerations and expertise are needed to make ethical decisions in engaged scholarship [4]. The Common Rule as written and in practice may not cover the full range of ethical considerations that arise in engaged research approaches nor adequately address the needs and interests of community investigators [11,12,13, 6]. Some recommendations have been implemented, for example by the Bronx Community IRB [16]
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
