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

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• 作者：Dmitry Khodyakov^a ; ^{Dmitry_Khodyakov@rand.org" class="auth_mail" title="E-mail the corresponding author} ; Lisa Mikesell^b ; Ron Schraiber^c ; Marika Booth^a ; Elizabeth Bromley^d ; ^e
• 关键词：CEnR ; community-engaged research ; NIH ; National Institutes of Health ; PCORI ; Patient-Centered Outcomes Research Institute
• 刊名：Translational Research
• 出版年：2016
• 出版时间：May 2016
• 年：2016
• 卷：171
• 期：Complete
• 页码：52-62.e1
• 全文大小：400 K

文摘

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.