Beyond Altruism - Exploring Payment for Research Participation

Neal Dickert is Associate Professor of Medicine in the Division of Cardiology at the Emory University School of Medicine. He holds a secondary appointment in Epidemiology at the Rollins School of Public Health and is a senior faculty fellow at the Emory Center for Ethics. He is Associate Director of the Emory Health Services Research Center and Director of the Georgia Clinical and Translational Science Alliance Recruitment Center. Dr. Dickert is a board-certified cardiologist and PhD-trained ethics researcher.

Dr. Dickert’s research focuses on ethical issues in clinical research and decision-making in clinical cardiology. Specific emphases in research ethics include the conduct of trials in acute care, recruitment and consent for clinical research generally, and the use of incentives and other influences on decision-making. He is an alumnus of the Greenwall Faculty Scholars Program and a past recipient of the Pillars of PRIM&R award. Dr. Dickert is also a member of multiple Data Safety and Monitoring Committees.

Luke is a Sr. Chair Director at Advarra IRB where he provides analysis and guidance on complex ethical issues arising in the course of clinical research study design and human participant protection. He holds a PhD in Philosophy with a concentration in Ethics from the University of Toronto and an MA in Religion, summa cum laude, from Yale Divinity School.

Emily Largent, JD, PhD, RN, is the Emanuel and Robert Hart Assistant Professor of Medical Ethics and Health Policy. She holds a secondary appointment at Penn Law, is a Senior Fellow at the Leonard Davis Institute of Health Economics and is affiliated with the Center for Health Incentives and Behavioral Economics. Dr. Largent’s work explores ethical and regulatory aspects of human subjects research and the translation of research findings into care.

Amie Devlin has an MPH from George Washington University, a Master’s of Urban Bioethics from Temple University, and a PhD in epidemiology from Drexel University. Dr. Devlin is an Epidemiologist at Stratis Group/BluePrint Orphan currently working with rare diseases and has over ten years’ experience working with IRBs. She has a deep interest in the ethics surrounding financial compensation in medical research. Prior to working as an epidemiologist, she served as Research Program Manager for Temple Health: Block-by-Block (THB3), a research partnership at Lewis Katz School of Medicine which aimed to better understand the health concerns of people living in North Philadelphia. In this role, she conducted qualitative interviews in order to better understand community perspectives on medical research. In addition, her Master’s thesis focused on the ethics surrounding financial compensation in medical research, drawing similarities between medical research participation and other risky professions.

Alexandra Collins, PhD, is a medical social scientist, investigator, and Assistant Professor in the Department of Epidemiology at Brown University’s School of Public Health, and is a member of the People, Place, and Health Collective. Her community-engaged ethnographic and qualitative research focuses broadly on: social, structural, and built environmental influences on risk, harm, and health outcomes among people who use drugs; drug use outcomes; overdose and overdose prevention; implementation and effectiveness of harm reduction interventions; and best practices.

Dr. Dustin Krutsinger is an Assistant Professor of Medicine in the Division of Pulmonary, Critical Care & Sleep Medicine at the University of Nebraska Medical Center. He completed his undergraduate and medical degrees at the University of Iowa. He completed his fellowship training in Pulmonary and Critical Care Medicine at the University of Pennsylvania. While at Penn, he completed a Master’s of Science in Clinical Epidemiology.

Dr. Krutsinger’s research focus is on the efficient and equitable conduct of critical care clinical trials. He is developing and evaluating novel methods to encourage research participation among critically ill patients through both financial and nonfinancial incentives and nudges. Additionally, he is focused on how consent methods and incentives may disproportionately encourage or discourage participation among historically marginalized groups, improving or worsening existing disparities in research participation.

Dr. Jill A. Fisher is Professor in the Department of Social Medicine and Center for Bioethics at the University of North Carolina at Chapel Hill. She holds a PhD in Science and Technology Studies, and her research primarily focuses on how clinical trials are conducted and who participates in them as researchers and participants. She has published more than 50 articles and book chapters, and she is the author of Medical Research for Hire: The Political Economy of Pharmaceutical Clinical Trials (Rutgers University Press, 2009) and Adverse Events: Race, Inequality, and the Testing of New Pharmaceuticals (New York University Press, 2020). More information about Dr. Fisher as well as many of her publications can be found at her website: www.jillfisher.net

As a trained medical anthropologist, Dr. Abadie’s research focuses on how different forms of social stratification, in particular, class, race, and ethnicity, contribute to producing and reproducing health inequalities in marginalized populations. His ethnography of professional “guinea pigs” earning a living by participating in Phase I clinical trials in Philadelphia documents the ways in which financial compensation is employed by the pharmaceutical industry to recruit and retain study participants who are exposed to short and long-term risks. Dr. Abadie argues that financial compensation creates a new type of market-captive population whose ability to consent is jeopardized by financial inducements and that to better protect research subjects’ protections and oversight should be enhanced. Dr. Abadie has conducted extensive fieldwork on the ethics of clinical trials, HIV risk, People Who Inject Drugs (PWID), and health disparities among Latino populations in a variety of settings in Latin America, the Caribbean, and the US.

I have been a lung cancer advocate for 20 years and then diagnosed myself with the disease in 2009. At the time there was excitement around using a targeted therapy as adjuvant therapy in the post operative setting for people with EGFR mutant lung cancer. There was a trial in NY, but I couldn’t participate because I lived in Chicago, had four little kids and the financial burden was too great. I had another opportunity about three years back, but the travel and financial burden was too great, plus I had two kids in college and two in high school.

I also have been advocating for many years and telling researchers to change their mindset and instead of asking why patients are reluctant to participate in trials, ask why aren’t we changing the way we develop trials in a way that will allow more patients to participate.