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On using ethical principles of community-engaged research in translational science
Accepted manuscript   Open access   Peer reviewed

On using ethical principles of community-engaged research in translational science

Dmitry Khodyakov, Lisa Mikesell, Ron Schraiber, Marika Booth and Elizabeth Bromley
Translational Research, Vol.171, pp.52-62
2016
DOI:
https://doi.org/10.7282/T3BK1FHJ

Abstract

Community-Engaged Research (CEnR) National Institutes of Health (U.S.) Patient-Centered Outcomes Research Institute (U.S.)
The transfer of new discoveries into both clinical practice and wider community calls for reliance on interdisciplinary translational teams that include researchers with different areas of expertise, representatives of healthcare systems, including patients, and community organizations. Engaging new stakeholders in research, however, calls for a re-consideration or expansion of the meaning of ethics in translational research. We solicited expert opinion to identify ethical principles that may be novel to translational research. To do so, we conducted two online, modified-Delphi panels with 63 expert stakeholders who iteratively rated and discussed nine ethical principles commonly used in community-engaged research in terms of their importance and feasibility for use in translational research. The RAND/UCLA Appropriateness Method was used to analyze the data and determine agreement and disagreement among participating experts. Both panels agreed that ethical translational research should be “grounded in trust.” While the academic panel endorsed “culturally appropriate” and “forthcoming with community about study risks and benefits,” the mixed academic-community panel endorsed “scientifically valid” and “ready to involve community in interpretation and dissemination” as important and feasible principles of ethical translational research. These findings suggest that in addition to protecting human subjects, contemporary translational science models may need to account for the interests of, and owe certain ethical obligations to, members of the investigative team and the community at large.
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Accepted Manuscript Open Access
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http://dx.doi.org/10.1016/j.trsl.2015.12.008View
Translational Research
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