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  • 标题:Equality and Equity in Compensating Patient Engagement in Research: A Plea for Exceptionalism
  • 本地全文:下载
  • 作者:Jean-Christophe Bélisle-Pipon ; Vincent Couture ; Marie-Christine Roy
  • 期刊名称:Research Ethics
  • 印刷版ISSN:1747-0161
  • 电子版ISSN:2047-6094
  • 出版年度:2022
  • 卷号:18
  • DOI:10.1177/17470161211059993
  • 语种:English
  • 出版社:SAGE Publications
  • 摘要:Engaging citizens and patients in research has become a truism in many fields of health research. It is now seen as a laudable—if not compulsory—activity in research for yielding more impactful and meaningful citizen/patient outcomes and steering research in the right direction. Although this research approach is increasingly common and commendable, we recently encountered a major obstacle in obtaining an ethics certificate from an institutional review board (IRB) to conduct a study that places citizen/patient perspectives on equal footing with those of academic/policy experts. The obstacle was the interpretation of fairness in terms of compensation for research participation (i.e. honoraria). In terms of research ethics, this raised an important question: Should all types of participants be compensated equally, or should exceptions be made for citizen/patient participants? We argue that there are good reasons for exceptionalism and that clearer guidance on citizen/patient engagement in research should be embedded into research ethics doctrine.
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