Pursuing Fair and Just Compensation for Research Participants

An Open Letter to the Research Ethics Community

Author

Roberto Abadie, PhD; Emily Anderson, PhD; Jake Eberts; Holly Fernandez Lynch, JD; Jill Fisher, PhD; Luke Gelinas, PhD; Emily Largent, PhD; Lindsay McNair, MD

Publish date

Pursuing Fair and Just Compensation for Research Participants: An Open Letter to the Research Ethics Community
Topic(s): Clinical Trials & Studies Editorial-AJOB Human Subjects Research & IRBs Justice Research Ethics

This editorial appears in the  July 2025 issue of the American Journal of Bioethics.

A cornerstone of modern research ethics oversight is the avoidance of undue influence on potential research participants to enroll in studies. Yet little guidance is given as to what influence is “undue”. Concerns over undue influence often arise in discussions of payment to research participants, and many research ethics oversight bodies default to “payment conservatism,” preferring minimal compensation to participants (or none at all) out of an abundance of caution. This practice, however, is unfair and does not convincingly protect against harm or undue influence.

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.

There is little empirical evidence that payments at levels commonly used in clinical trials, even those in the range of several thousand dollars, result in undue influence—that is, they do not impair the ability of prospective research participants to rationally assess the risks and benefits of participation nor result in choices that conflict with their values. This is true even among participants principally motivated by payment. Qualitative research exploring how participants conceive of payment and their own participation has failed to find convincing evidence of impaired decision-making and irrationality in the face of payment, even for highly intensive studies offering relatively large sums. Similarly, experimental attempts to find evidence of monetary undue influence of prospective research participants have failed to yield convincing evidence that the problem is at all common. This also holds true for similar studies in low-income countries, even when payment is substantial relative to average incomes.

IRBs/RECs must be more cognizant of the negative effects of low compensation. Among healthy participants in early phase trials, low payment levels lead to targeting potential participants with greater financial need who are comparatively more willing to accept lower amounts. Rather than protecting participants, putting a ceiling on payment merely shifts the risks and burdens of research participation down the socioeconomic ladder. Among trials that include patients (as opposed to healthy participants), lack of adequate payment presents a financial barrier to research that may contribute to the inability for underrepresented groups to participate. For non-clinical trials, greater compensation may also help promote participation by traditionally underrepresented group.
Yet some IRBs/RECs remain unduly anxious about undue influence. In the United States, regulatory assurances may help assuage this fear: in 2022, then-director of the Office for Human Research Protections Jerry Menikoff stated that in the Office’s view, payment to participants “almost never” actually constitutes undue influence, and IRBs/RECs “seem far more worried about [monetary] undue influence than OHRP as a regulator”.

Ultimately, payment may alter one’s willingness to accept risk and discomfort, but this is not unethical per se. Instead, the key question is whether one can understand potential risk and discomfort and make a reasonable, voluntary decision about participation. If there is doubt about the decision being either informed or voluntary, then efforts should focus on improving the informed consent process rather than lowering payment. If concern with payment levels for a given study persists, then the IRB/REC should examine why they worry about participation in the study—perhaps it is riskier than they initially anticipated (a distinct issue from payment).

Among populations that could be considered highly vulnerable, payment is still often appropriate, and even ethically mandatory at times. Far too often, in the name of protection of the vulnerable, IRBs/RECs adopt well-meaning but unnecessarily paternalistic and even condescending views of prospective participants. Unfounded assumptions about the capacity of those who use illicit drugs, engage in sex work, or live with HIV, for example, can lead to unfair mandates against any payment whatsoever, even though payment can be positive for participants. The problem can also extend to the forms of payment, with some IRBs/RECs preferring gift cards, which then create additional burdens to convert to cash. Fair compensation through instruments preferred by participants is key to establishing a sense of trust and reciprocity. Lowering payments out of a fear of undue influence can also slow recruitment, and by extension, the production of critical scientific knowledge needed to help the very communities and populations in question.

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.

Progress on compensation for research participation should also not distract from the equally important goal of realizing a comprehensive system of compensation for research-related injury in countries where such a system is not in place, including the United States. While efforts on both fronts should ideally be undertaken together, better compensation for participation should not be withheld solely because of a lack of adequate compensation for research-related injury for the reasons outlined above: lowered payments do not substantively protect participants but do threaten justice and fairness.
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


Individual signatories have signed in their personal capacity only. Individual signatories’ institutions are listed solely for identification purposes and do not represent their endorsement of this letter.


Signatories:
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

We use cookies to improve your website experience. To learn about our use of cookies and how you can manage your cookie settings, please see our Privacy Policy. By closing this message, you are consenting to our use of cookies.