Paying people to participate in clinical research can be seen as ethically problematic. Yet community members expressed the opposite view, according to the results of a recent study.1
Researchers interviewed 58 participants (many of whom were Black women) about their attitudes on financial compensation for research participants. Respondents strongly believed study participants should be compensated because they take risks and give time.
“I was shocked by the findings. I thought that people were going to agree that a high compensation amount was exploitative, but they felt the opposite,” says Amie Devlin, MPH, MA, the study’s lead author. The community members did express a few concerns. Some thought compensation could entice low-income populations to hide harmful side effects so they would continue to be paid.
Others pointed out participants might knowingly provide false information to bypass exclusion criteria. Either scenario could invalidate the study results.
“My personal interest in this topic began when I was working with an IRB to review research protocols. There was constant discussion about what level of compensation we could approve before it became coercive,” says Devlin, former research program manager at Temple University.
Devlin was inclined to agree that high payments were problematic. Then, she started working with Temple Health: Block by Block, a long-standing cohort study conducted in North Philadelphia. During that time, Devlin heard what people outside of IRBs thought. Many people believed it was exploitative not to compensate people for their role in the study.
“In listening to the interviews and thinking more about it, I have to say that I completely changed my stance,” Devlin says.
Financial compensation acts as a motivator in many other areas, such as employment. “Yet with clinical research, we tend to think that people can no longer think clearly and should no longer be permitted to make their own decisions,” Devlin explains.
Ethics reviewers tend to look at the dollar amount “in a vacuum,” Devlin notes. The question is framed as “Is $40 too much money?” instead of asking, “Does $40 appropriately compensate a person for their time, effort, and discomfort?”
“To some extent, I think that the view of financial compensation as inherently exploitative comes from within the research establishment,” Devlin offers.
IRBs tend to be “nervous about payment,” says Holly Fernandez Lynch, JD, MBe, assistant professor of medical ethics at the University of Pennsylvania. Typically, IRBs focus on whether overly high payment could cause people to make poor judgments against their own interests.
“The worry is that if people can make more money in research than they can make in other activities, then money may be an undue inducement,” Fernandez Lynch says.
It also could cause people to lie about their eligibility or any adverse events they experience out of fear they will be removed from the trial. Still, unfairly low payments also are an ethical concern.2 Researchers are asking participants to give time and accept certain burdens.
“Why shouldn’t they be paid for that?” Fernandez Lynch asks. “We don’t expect people to always be altruists in their other endeavors, including risky work.”
Another ethical concern is a fear that payment will only attract those who are economically vulnerable. “That can perhaps be improved by offering even more payment so that participation becomes more attractive to a wider variety of people,” Fernandez Lynch suggests.
Researchers, IRBs, and ethicists can advance discussions on the ethics of payment, using available resources.3,4 “For example, policies can encourage researchers to provide justifications for the amount of payment they are offering and why it is fair,” Fernandez Lynch says.
IRBs also can justify any concerns raised about payment amounts. IRBs must differentiate between mere influence (in which payment may affect someone’s choice but not necessarily cause them to do something unreasonable) and undue influence.
“Keep in mind that we are all reasonably influenced by money every day,” Fernandez Lynch says. “Payment doesn’t make the research ethical, and it doesn’t make it unethical, either.”
REFERENCES
- Devlin A, Brownstein K, Goodwin J, et al. ‘Who is going to put their life on the line for a dollar? That’s crazy’: Community perspectives of financial compensation in clinical research. J Med Ethics 2021; Mar 10;medethics-2020-106715. doi: 10.1136/medethics-2020-106715. [Online ahead of print].
- Lynch HF, Darton TC, Levy J, et al. Promoting ethical payment in human infection challenge studies. Am J Bioeth 2021;21:11-31.
- Office for Human Research Protections. Attachment A – addressing ethical concerns offers of payment to research participants. 2019.
- Gelinas L, Largent EA, Cohen IG, et al. A framework for ethical payment to research participants. N Engl J Med 2018;378:766-771.
Paying people to participate in clinical research can be seen as ethically problematic. Yet community members expressed the opposite view, according to the results of a recent study.
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