Monday, May 26, 2025

Ethical compensation for research participants: an open letter

 Institutional review boards (IRBs) are often faced with the question of whether research participants should or must be compensated, and how much.  In the medical ethics community there is often a presumption that there are ethical reasons not to offer participants too much compensation. This is a very different intuition from the more general notion (embodied e.g. in minimum wage laws) that there are ethical reasons not to offer too little compensation.

I'm one of 64 signers of an open letter about this...


Abadie, R. et al. (2025) ‘Pursuing Fair and Just Compensation for Research Participants: An Open Letter to the Research Ethics Community’, The American Journal of Bioethics, pp. 1–5. doi: 10.1080/15265161.2025.2506328.
 

"We, the 64 undersigned, from fields including philosophy, law, medicine, policy, public health, patient advocacy, and research ethics, offer this open letter to highlight the growing recognition of the pitfalls of excessive concern over payment to research participants. Experts in the field of research oversight, including institutional review boards/research ethics committees (IRB/RECs), now recognize that for adult participants capable of providing their own informed consent, instances of monetary undue influence are generally quite rare, underpayment is far more common and ethically concerning than overpayment, and that lowering payments threatens justice and fairness without providing substantive protection for participants.

...

"Absent strong evidence that monetary payment will lead to undue influence, it is likely that more harm than good is done by lowering compensation levels for a given study. Research participation generates immense social value, and generous compensation can reflect this value and serve as an important sign of respect and appreciation for participants (Fernandez Lynch et al. Citation2021).

...

"Concern over undue influence through monetary compensation, while well intended, receives outsized attention, even at the expense of other ethical issues. Ultimately, there must be very strong rationale when suggesting such limits for an otherwise approved study, and attempts to limit payment based on the potential for undue influence should be scrutinized especially closely. IRBs/RECs should still keep in mind the amount of time required and burden on participants to ensure at least a minimum standard of compensation is met. At times, they should even require sponsors or investigators to increase compensation amounts when what they are proposing is insufficient. It is high time that the default question shift from “is this payment too much?” to “is this enough?” in clinical trials."

 

Signed by:

Roberto Abadie    Assistant Professor, University of Wisconsin-Madison Department of Kinesiology
Adam L. Anderson    Associate Professor of Medicine, Washington University in St. Louis
Emily E. Anderson    Professor of Bioethics, Loyola University Stritch School of Medicine
Andrew Berman    Professor of Medicine, Rutgers New Jersey Medical School
Barbara Bierer    Professor of Medicine, Harvard Medical School, and Faculty Director, MRCT Center
François Bompart    Member, INSERM Ethics Committee (France)
Brandon Brown    Professor of Medicine, University of California, Riverside, School of Medicine
Arthur Caplan    Head, Division of Medical Ethics, NYU Grossman School of Medicine
Carolyn Riley Chapman    Lead Investigator/Faculty, Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard
Coalition for Clinical Trial Equity
Alexandra Collins    Assistant Professor of Community Health, Tufts University
Marci Cottingham    Associate Professor of Sociology, Kenyon College
Stephanie Solomon Cargill    Associate Professor of Research Ethics, Albany Medical College
Arlene M. Davis    Professor of Social Medicine, UNC School of Medicine
David DeGrazia    Elton Professor of Philosophy, George Washington University
David Diemert    Professor of Medicine, George Washington University
Anna Durbin    Professor, Johns Hopkins Bloomberg School of Public Health
Jake Earl    Adjunct Lecturer in Philosophy, Georgetown University
Jake D. Eberts    Member of the Board of Directors, 1Day Sooner
Gunnar Esiason    Head of Patient Engagement & Patient-Centered Innovation, RA Ventures
James A. Feldman    Professor of Emergency Medicine, Boston University School of Medicine
Holly Fernandez Lynch    Associate Professor of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine
Susan S. Fish    Professor, Boston University Chobanian & Avedisian School of Medicine
Celia B. Fisher    Marie Ward Doty Endowed University Chair in Ethics and Professor of Psychology
Jill A. Fisher    Professor of Social Medicine, UNC Center for Bioethics
Allison Foss    Executive Director, Myasthenia Gravis Association
Foundation for Sarcoidosis Research
Luke Gelinas    Senior IRB Chair Director, Advarra
Kevin Griffith    Assistant Professor of Health Policy, Vanderbilt University
Marielle Gross    Founder/ceo, de-bi, co; Faculty, Johns Hopkins Berman Institute of Bioethics
Scott D. Halpern    John M. Eisenberg Professor in Medicine, University of Pennsylvania
Logan Harper    ILD & Sarcoidosis Center, Cleveland Clinic, Assistant Professor of Medicine, CCLCM/CWRU School of Medicine
David A. Heagerty    Associate Director, University of Pennsylvania IRB
Kristin Hermann    Executive Vice President, Strategic Accounts, Scout
W. Ennis James    Associate Professor of Medicine and Sarcoidosis Program Director, Medical University of South Carolina
Steven Joffe    Art and Ilene Penn Professor and Chair of Medical Ethics & Health Policy, University of Pennsylvania Perelman School of Medicine
Nancy M. P. King    Emeritus Professor, Wake Forest University School of Medicine
Stephanie A. Kraft    Assistant Professor, Geisinger College of Health Sciences
Walter K. Kraft    Professor, Thomas Jefferson University
Benjamin Krohmal    Assistant Professor, Georgetown University School of Medicine
Emily A. Largent    Associate Professor of Medical Ethics, University of Pennsylvania Perelman School of Medicine
Anne Drapkin Lyerly    Professor of Social Medicine, University of North Carolina at Chapel Hill
Lazarex Cancer Foundation
Dylan Matthews    Senior Correspondent, Vox
Lindsay McNair    Principal Consultant, Equipoise Consulting
Josh Morrison    President, 1Day Sooner
Joseph Millum    Senior Lecturer, University of St Andrews
Torin Monahan    Professor, University of North Carolina at Chapel Hill
Axel Ockenfels    Professor of Economics at the University of Cologne and Director at the Max Planck Institute for Research on Collective Goods in Bonn
Joshua Osowicki    Infectious diseases physician and Team Leader, Murdoch Children’s Research Institute, Melbourne, Australia
Leah Pierson    MD/PhD candidate, Harvard Medical School; Cohost of the Bio(un)ethical podcast
Jessica Propps    Caregiver Advocate, Foundation for Sarcoidosis Research
Jeanne M. Regnante    Principal, Patient 3i, LLC
David B. Resnik    Bioethicist
Donald Richardson    Cardiovascular Disease Fellow, Cedars-Sinai Medical Center
Alvin Roth    Craig and Susan McCaw Professor of Economics, Stanford University
Julian Savulescu    Professor of Medical Ethics, National University of Singapore
Scout Clinical    
Peter H. S. Sporn    Professor of Medicine, Northwestern University Feinberg School of Medicine
Kawsar Talaat    Associate Professor, Johns Hopkins Bloomberg School of Public Health
Rebecca L. Walker    Professor of Philosophy and of Social Medicine, University of North Carolina at Chapel Hill
Margaret Waltz    Research Associate, University of North Carolina at Chapel Hill
Kathryn Washington    Sarcoidosis patient advocate
Sarah A. White    Executive Director, The Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard
Megan M. Wood    Assistant Professor of Communication and Media, Ohio Northern University

 

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