title: On using ethical principles of community-engaged research in translational science.
abstract: The transfer of new discoveries into both clinical practice and the wider community calls for reliance on interdisciplinary translational teams that include researchers with different areas of expertise, representatives of health care systems and community organizations, and patients. Engaging new stakeholders in research, however, calls for a reconsideration or expansion of the meaning of ethics in translational research. We explored expert opinion on the applicability of ethical principles commonly practiced in community-engaged research (CEnR) to translational research. To do so, we conducted 2 online, modified-Delphi panels with 63 expert stakeholders who iteratively rated and discussed 9 ethical principles commonly used in CEnR 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." Although 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 need to account for the interests of, and owe ethical obligations to, members of the investigative team and the community at large.
authors.affiliation: RAND Corporation, Santa Monica, Calif. Electronic address: Dmitry_Khodyakov@rand.org.
authors.forename: Dmitry
authors.initials: D
authors.lastname: Khodyakov
authors.affiliation: Communication Department, School of Communication and Information, Institute for Health, Health Care Policy and Aging Research, Rutgers University, New Brunswick, NJ.
authors.forename: Lisa
authors.initials: L
authors.lastname: Mikesell
authors.affiliation: The Well-Being Programs, Inc., Crestline, Calif.
authors.forename: Ron
authors.initials: R
authors.lastname: Schraiber
authors.affiliation: RAND Corporation, Santa Monica, Calif.
authors.forename: Marika
authors.initials: M
authors.lastname: Booth
authors.affiliation: Semel Institute Center for Health Services and Society, Department of Psychiatry and Biobehavioral Sciences, University of California, Los Angeles; Desert Pacific MIRECC, West Los Angeles VA Healthcare Center, Los Angeles, Calif.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Bromley
mesh_terms: D055812:Community-Based Participatory Research / Q000941:ethics*; D005260:Female; D006801:Humans; D008297:Male; D057170:Translational Research, Biomedical / Q000941:ethics*