Offering payment to clinical research subjects, in an effort to enhance recruitment by providing an incentive to take part or enabling subjects to participate without financial sacrifice, is a common yet uneven and contentious practice in the US. Concern exists regarding the potential for payment to unduly influence participation and thus obscure risks, impair judgment, or encourage misrepresentation. Heightening these concerns is the participation not only of adults but also of children in pediatric research trials. Thorough assessment of risks, careful eligibility screening, and attention to a participant’s freedom to refuse all serve to reduce the possibility of compensation adversely affecting the individual and/or the study. Institutional review boards currently evaluate payment proposals with minimal guidance from federal regulations. Here, reasons for providing payment, payment models, ethical concerns, and areas for further research are examined.
Christine Grady
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2018 | |
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DR Wassenaar, CM Slack |
SOUTH AFRICAN JOURNAL OF PSYCHOLOGY | 2016 |
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Health Expectations | 2016 |
The Role of Clinical Trial Participation in Cancer Research: Barriers, Evidence, and Strategies
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SN Whitney |
2016 | |
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2016 | |
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Journal of Personality Disorders | 2015 |
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PloS one | 2015 |
Ethical Issues in Environmental Health Research Related to Public Health Emergencies: Reflections on the GuLF STUDY
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Role of Pharmacovigilance in India: An overview
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Young People's Experiences of Participation in Clinical Trials: Reasons for Taking Part
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Motivations and concerns about adolescent tuberculosis vaccine trial participation in rural Uganda: a qualitative study
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2015 | |
Unequal treatment of human research subjects
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Does incentivising pill-taking 'crowd out' risk-information processing? Evidence from a web-based experiment
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Adaptive and Maladaptive Personality Traits in High-Risk Gamblers
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Journal of Personality Disorders | 2014 |
Heterogeneity in IRB Policies with Regard to Disclosures about Payment for Participation in Recruitment Materials
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The Journal of Law, Medicine & Ethics | 2014 |
What Are Fair Study Benefits in International Health Research? Consulting Community Members in Kenya
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PloS one | 2014 |
“I Want to Know More About Who We Are”: New Directions for Research With Older Lesbians
P Averett, A Robinson, C Jenkins, I Yoon |
Journal of Gerontological Social Work | 2014 |
Framing disability among young adults with disabilities and non-disabled young adults: an exploratory study
M Soffer, F Chew |
Disability and Rehabilitation | 2014 |
Motivational Factors for Participation in Biomedical Research: Evidence From a Qualitative Study of Biomedical Research Participation in Blantyre District, Malawi
J Mfutso-Bengo, L Manda-Taylor, F Masiye |
Journal of Empirical Research on Human Research Ethics | 2014 |
Lessons from the field: strategies to improve patient recruitment for low vision interventional research
AT Aw, V Drury, P Chiang, HJ Soon, CS Tey, PS Lim |
International Journal of Ophthalmic Practice | 2014 |
Conducting Health Disparities Research with Criminal Justice Populations: Examining Research, Ethics, and Participation.
Valera P, Cook S, Macklin R, Chang Y |
Ethics & Behavior | 2014 |
The Textbook of Pharmaceutical Medicine: Griffin/The Textbook of Pharmaceutical Medicine
J Barrett |
The Textbook of Pharmaceutical Medicine: Griffin/The Textbook of Pharmaceutical Medicine | 2013 |
Phase 1 clinical trials in end-stage cancer: patient understanding of trial premises and motives for participation
T Godskesen, P Nygren, K Nordin, M Hansson, U Kihlbom |
Supportive Care in Cancer | 2013 |
Ethical Considerations for Conducting Health Disparities Research in Community Health Centers: A Social-Ecological Perspective
C Boutin-Foster, E Scott, J Melendez, A Rodriguez, R Ramos, B Kanna, W Michelen |
American journal of public health | 2013 |
Ethical considerations in HIV cure research: points to consider
B Lo, C Grady |
Current Opinion in HIV and AIDS | 2013 |
Safety Monitoring in Clinical Trials
B Yao, L Zhu, Q Jiang, H Xia |
Pharmaceutics | 2013 |
Pediatric clinical trials
SB Bavdekar |
Perspectives in Clinical Research | 2013 |
Compensation in clinical research: The debate continues
M Pandya, C Desai |
Perspectives in Clinical Research | 2013 |
Ethical issues in clinical research
V Muthuswamy |
Perspectives in Clinical Research | 2013 |
Recent Changes to Clinical Trial Regulation in India: Focus on Serious Adverse Events, Compensation and Registration of Ethics Committees
M Karwa, S Arora, SG Agrawal |
Pharmaceutical medicine | 2013 |
Concealment and fabrication by experienced research subjects
EG Devine, ME Waters, M Putnam, C Surprise, K OMalley, C Richambault, RL Fishman, CM Knapp, EH Patterson, O Sarid-Segal, C Streeter, L Colanari, DA Ciraulo |
Clinical trials (London, England) | 2013 |
Concealment and fabrication: The hidden price of payment for research participation?
NW Dickert |
Clinical trials (London, England) | 2013 |
Reliability and Validity of the Personality Inventory for DSM-5 (PID-5): Predicting DSM-IV Personality Disorders and Psychopathy in Community-Dwelling Italian Adults
A Fossati, RF Krueger, KE Markon, S Borroni, C Maffei |
Assessment | 2013 |
Regenerative Medicine Ethics
LF Hogle |
2013 | |
The impact of health insurance mandates on drug innovation: evidence from the United States.
Chun N, Park M |
2013 | |
Phase 1 clinical trials in end-stage cancer: patient understanding of trial premises and motives for participation.
Godskesen T, Nygren P, Nordin K, Hansson M, Kihlbom U |
Supportive Care in Cancer | 2013 |
Precommitting to Serve the Underserved
N Eyal, T Bärnighausen |
The American Journal of Bioethics | 2012 |
Forms of benefit sharing in global health research undertaken in resource poor settings: a qualitative study of stakeholders' views in Kenya
GM Lairumbi, M Parker, R Fitzpatrick, MC English |
Philosophy, ethics, and humanities in medicine : PEHM | 2012 |
The impact of health insurance mandates on drug innovation: evidence from the United States
N Chun, M Park |
The European Journal of Health Economics | 2012 |
Payment of Research Subjects, Ethical Issues in
LD Castro, CL Teoh |
Encyclopedia of Applied Ethics | 2012 |
New York State’s landmark policies on oversight and compensation for egg donation to stem cell research
BE Roxland |
Regenerative Medicine | 2012 |
Principles and Practice of Clinical Research
J Sun, BD Freeman, C Natanson |
Principles and Practice of Clinical Research | 2012 |
Patient Recruitment into a Multicenter Randomized Clinical Trial for Kidney Disease: Report of the Focal Segmental Glomerulosclerosis Clinical Trial (FSGS CT)
M Ferris, V Norwood, M Radeva, JJ Gassman, A Al-Uzri, D Askenazi, T Matoo, M Pinsk, A Sharma, W Smoyer, J Stults, S Vyas, R Weiss, D Gipson, F Kaskel, A Friedman, M Moxey-Mims, H Trachtman |
Clinical and Translational Science | 2012 |
Paying Patients for Their Tissue: The Legacy of Henrietta Lacks
RD Truog, AS Kesselheim, S Joffe |
Science | 2012 |
MASAC Consensus Conference: impediments to conducting clinical research in persons with haemophilia, von Willebrand's disease and rare bleeding disorders
MA Koerper, N Frick, CM Kessler |
Haemophilia | 2012 |
A randomized controlled trial of short and standard-length consent forms for a genetic cohort study: is longer better?
K Matsui, RK Lie, TC Turin, Y Kita |
Journal of Epidemiology | 2012 |
A Randomized Controlled Trial of Short and Standard-Length Consent Forms for a Genetic Cohort Study: Is Longer Better?
K Matsui, RK Lie, TC Turin, Y Kita |
Journal of Epidemiology | 2012 |
MONEY, COERCION, AND UNDUE INDUCEMENT: A SURVEY OF ATTITUDES ABOUT PAYMENTS TO RESEARCH PARTICIPANTS
Emily A. Largent, Christine Grady, Franklin G. Miller, Alan Wertheimer |
IRB Ethics and Human Research | 2012 |
Incentives for Offender Research Participation Are Both Ethical and Practical
RK Hanson, EJ Letourneau, ME Olver, RJ Wilson, MH Miner |
Criminal Justice and Behavior | 2012 |
Translation of Family Health History Questions on Cardiovascular Disease and Type 2 Diabetes with Implications for Latina Health and Nursing Practice
GT Mudd, MC Martinez |
Nursing Clinics of North America | 2011 |
Ethical issues in adult oncology randomized clinical trials
EP Hamilton, JM Peppercorn |
Clinical Investigation | 2011 |
‘I am going to be a dad’: experiences and expectations of adolescent and young adult expectant fathers
L Wilkes, J Mannix, D Jackson |
Journal of Clinical Nursing | 2011 |
Clinical Research Participation among Aging Adults Enrolled in an Alzheimer’s Disease Center Research Registry
AL Jefferson, S Lambe, C Chaisson, J Palmisano, KJ Horvath, J Karlawish |
Journal of Alzheimer's disease : JAD | 2011 |
Challenges and Strategies in Recruiting, Interviewing, and Retaining Recent Latino Immigrants in Substance Abuse and HIV Epidemiologic Studies : Recent Latino Immigrants, Substance Abuse and HIV Studies
MD la Rosa, R Babino, A Rosario, NV Martinez, L Aijaz |
American Journal on Addictions | 2011 |
Challenges and Strategies in Recruiting, Interviewing, and Retaining Recent Latino Immigrants in Substance Abuse and HIV Epidemiologic Studies: Recent Latino Immigrants, Substance Abuse and HIV Studies
MD la Rosa, R Babino, A Rosario, NV Martinez, L Aijaz |
American Journal on Addictions | 2011 |
Perceptions of moral integrity: Contradictions in need of explanation
C Laabs |
Nursing Ethics | 2011 |
So different, yet so similar: meta-analysis and policy modeling of willingness to participate in clinical trials among Brazilians and Indians
G Zammar, H Meister, J Shah, A Phadtare, L Cofiel, R Pietrobon |
PloS one | 2010 |
Strategies to recruit and retain college smokers in cessation trials
MM Davidson, NJ Cronk, KJ Harris, S Harrar, D Catley, GE Good |
Research in Nursing & Health | 2010 |
A Legal Defense for Compensating Research Egg Donors
SL Crockin |
Cell Stem Cell | 2010 |
Who’s Doing the Math? Are We Really Compensating Research Participants?
E Ripley, F Macrina, M Markowitz, C Gennings |
Journal of Empirical Research on Human Research Ethics | 2010 |
Why do we pay? A national survey of investigators and IRB chairpersons
E Ripley, F Macrina, M Markowitz, C Gennings |
Journal of Empirical Research on Human Research Ethics | 2010 |
Comprehension and Informed Consent: Assessing the Effect of a Short Consent Form
Leanne Stunkel, Meredith Benson, Louise McLellan, Ninet Sinaii, Gabriella Bedarida, Ezekiel Emanuel, Christine Grady |
IRB Ethics and Human Research | 2010 |
Comprehension and informed consent: assessing the effect of a short consent form
Leanne Stunkel, Meredith Benson, Louise McLellan, Ninet Sinaii, Gabriella Bedarida, Ezekiel Emanuel, Christine Grady |
IRB Ethics and Human Research | 2010 |
So Different, yet So Similar: Meta-Analysis and Policy Modeling of Willingness to Participate in Clinical Trials among Brazilians and Indians
G Zammar, H Meister, J Shah, A Phadtare, L Cofiel, R Pietrobon, G Malaga |
PloS one | 2010 |
Who's Doing the Math? Are We Really Compensating Research Participants?
E Ripley, F Macrina, M Markowitz, C Gennings |
Journal of Empirical Research on Human Research Ethics | 2010 |
Clinical Pharmacology: Current Topics and Case Studies
M Müller |
2010 | |
Pulmonary surfactant: an immunological perspective
ZC Chroneos, Z Sever-Chroneos, VL Shepherd |
Cellular physiology and biochemistry : international journal of experimental cellular physiology, biochemistry, and pharmacology | 2009 |
Financial Remuneration for Clinical and Behavioral Research Participation: Ethical and Practical Considerations
J Permuth-Wey, AR Borenstein |
Annals of Epidemiology | 2009 |
Manufacturing Mistrust: Issues in the Controversy Regarding Foster Children in the Pediatric HIV/AIDS Clinical Trials
J Slomka |
Science and Engineering Ethics | 2009 |
Chapitre 9. Offrir un manuel d'auto-traitement en guise de compensation éthiquement acceptable pour avoir participé à un projet de recherche en psychiatrie
S Bouchard, M Michaud, G Labonté-Chartrand |
Journal International de Bioéthique | 2009 |
Effective Strategies for Maintaining Research Participation in Clinical Trials
A Zweben, LM Fucito, SS O'Malley |
Drug Information Journal | 2009 |
Manufacturing mistrust: issues in the controversy regarding foster children in the pediatric HIV/AIDS clinical trials.
Slomka J |
Science and Engineering Ethics | 2009 |
Payments to normal healthy volunteers in phase 1 trials: avoiding undue influence while distributing fairly the burdens of research participation.
Iltis AS |
Journal of Medicine and Philosophy | 2009 |
The influence of monetary compensation on relapse among addicted participants: empirical vs. anecdotal evidence
JP Dempsey, SE Back, AE Waldrop, L Jenkins, KT Brady |
The American journal on addictions / American Academy of Psychiatrists in Alcoholism and Addictions | 2008 |
Environmental Health Research Involving Human Subjects: Ethical Issues
DB Resnik |
Environmental health insights | 2008 |
Participant Recruitment and Retention in Rehabilitation Research
KR Bell, F Hammond, T Hart, AK Bickett, NR Temkin, S Dikmen |
American Journal of Physical Medicine & Rehabilitation | 2008 |
Increasing the amount of payment to research subjects
DB Resnik, DB Resnick |
Journal of medical ethics | 2008 |
Compensating clinical trial participants from limited resource settings in internationally sponsored clinical trials: a proposal
P Ndebele, J Mfutso-Bengo, T Mduluza |
Malawi medical journal : the journal of Medical Association of Malawi | 2008 |
Compensating clinical trial participants from limited resource settings in internationally sponsored clinical trials : A proposal
P Ndebele, J Mfutso-Bengo, T Mduluza |
Malawi medical journal : the journal of Medical Association of Malawi | 2008 |
Increasing the amount of payment to research subjects
DB Resnick |
Journal of medical ethics | 2008 |
Effect of Participation Incentives on the Composition of National Health Surveys
A Moyer, M Brown |
Journal of Health Psychology | 2008 |
Ethical Issues in Disaster Research: Lessons from Hurricane Katrina
CY Ausbrooks, EJ Barrett, M Martinez-Cosio |
Population Research and Policy Review | 2008 |
Community consultation and communication for a population-based DNA biobank: the Marshfield clinic personalized medicine research project.
McCarty CA, Chapman-Stone D, Derfus T, Giampietro PF, Fost N |
American journal of medical genetics. Part A | 2008 |
Perceptions of financial payment for research participation among African-American drug users in HIV studies
J Slomka, S McCurdy, EA Ratliff, S Timpson, ML Williams |
Journal of General Internal Medicine | 2007 |
Recruiting vulnerable populations into research: a systematic review of recruitment interventions
SJ UyBico, S Pavel, CP Gross |
Journal of General Internal Medicine | 2007 |
Lessons learned from the Children's Environmental Exposure Research Study
DB Resnik, S Wing |
American journal of public health | 2007 |
Recruitment of research volunteers: methods, interest, and incentives
LR Goldenberg, EF Owens, JG Pickar |
The Journal of chiropractic education | 2007 |
Ethical issues in child psychopharmacology research and practice: emphasis on preschoolers
L Spetie, LE Arnold |
Psychopharmacology | 2007 |
First-in-Man (FIM) Clinical Trials Post-TeGenero: A Review of the Impact of the TeGenero Trial on the Design, Conduct, and Ethics of FIM Trials
A Nada, J Somberg |
American Journal of Therapeutics | 2007 |
Offering Parents Individualized Feedback on the Results of Psychological Testing Conducted for Research Purposes With Children: Ethical Issues and Recommendations
M Lefaivre, CT Chambers, CV Fernandez |
Journal of Clinical Child & Adolescent Psychology | 2007 |
Ethics and the payment of research subjects
L Beckford, MR Broome |
Psychiatry | 2007 |
Ethical issues in child psychopharmacology research and practice: emphasis on preschoolers.
Spetie L, Arnold LE |
Psychopharmacology | 2007 |
Phase I oncology trials: why the therapeutic misconception will not go away
W Glannon |
Journal of medical ethics | 2006 |
Ethical guideposts to clinical trials in oncology
M Bernstein |
Current oncology (Toronto, Ont.) | 2006 |
The Ethics of Paying Drug Users Who Participate in Research: A Review and Practical Recommendations
CL Fry, W Hall, A Ritter, R Jenkinson |
Journal of Empirical Research on Human Research Ethics | 2006 |
¿Los pacientes deben recibir una remuneración económica por su participación en ensayos clínicos terapéuticos?
R Dal-Ré, X Carné |
Medicina Clínica | 2006 |
Spending of Remuneration by Subjects in Non-Treatment Drug Abuse Research Studies
JE Kurlander, SL Simon-Dack, DA Gorelick |
The American Journal of Drug and Alcohol Abuse | 2006 |
Guinea Pig Duties: 5. Coercion and Inducement into Clinical Research
TJ Steiner |
Research Ethics | 2006 |
Financial capacity in persons with schizophrenia and serious mental illness: clinical and research ethics aspects
DC Marson, R Savage, J Phillips |
Schizophrenia Bulletin | 2005 |
The Vaccine Book
CA Siegrist |
The Vaccine Book | 2003 |