Equality and Equity in Compensating Patient Engagement in Research

A Plea for Exceptionalism

Bibliographic Data

ID21787563
AuthorsJean-Christophe Bélisle-Pipon (0000-0002-8965-8153, Harvard Law School, corresponding author), Vincent Couture (0000-0002-8811-0524, Université Laval), Marie-Christine Roy (Université de Montréal), Marie‐Christine Roy (0000-0002-1803-4079, Université de Montréal)
Year2022
Volume18
Issue2
Pages126-131
Publication date2022-04-01
Open AccessYes
TypeARTICLE
VenueResearch Ethics (JOURNAL)
Journal identifiersISSN: 1747-0161 • E-ISSN: 2047-6094
PublisherSAGE Publications (PUBLISHER • US)
DOI10.1177/17470161211059993
OpenAlexW3212272605
LanguageEN
Citations received5
References cited10

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

Doctrine · Exceptionalism · Normative · Plea · Political science · Public relations · Research ethics · Biomedical Ethics and Regulation · Ethics in Clinical Research · Law · Mental Health and Patient Involvement · Psychology · Social Psychology

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Open DOIOpen Access