‘Who is going to put their life on the line for a dollar? That’s crazy’: community perspectives of financial compensation in clinical research

Abstract

BackgroundFinancial compensation of research participants has been standard practice for centuries, however, there is an ongoing debate among researchers and ethicists regarding the ethical nature of this practice. While these debates develop ethical arguments and theories, they fail to incorporate input from those most affected by financial compensation: potential research participants.MethodsTo identify attitudes surrounding clinical research, participants of a long-standing cohort completed a one-time interview. Open-ended questions stimulated a participant-driven discussion surrounding medical research. Following a grounded theory methodology, 58 semistructured interview transcripts were coded, focusing on attitudes surrounding financial compensation of research participants.ResultsOf the interviews coded, the majority of participants identified as Black/African American (n=44) and were women (n=40). Five major themes emerged. In support of financial compensation, participants felt that study participants should be compensated for time, effort and risk. However, participants were concerned that compensation may differentially impact low-income populations and entice them to hide potentially harmful side effects. Participants also mentioned that financial compensation may invalidate study results if participants knowingly provide false information to subvert inclusion/exclusion criteria.ConclusionThe emergence of both positive and negative themes reiterates the complicated issue of providing financial compensation for study participation. While compensation as a motivator for research participation raises ethical concerns, participants discussed weighing the benefits with the risks in order to make an informed decision. To avoid paternalistic behaviours, research staff must allow potential research participants to review the available information and make the decision that best reflects their wishes.

Attitudes Toward Payment for Research Participation: Results from a U.S. Survey of People Living with HIV

“…Thus, while payment may be presented as a tool to boost study recruitment efforts [3] or reimburse for time and burdens, it may be implicitly interpreted by potential HIV research participants as a means of compensating for the riskiness of the procedures involved in the research study. This finding complements previous research that has found study payment signals risk level for adults in the general population [5] and that study participants expect to be compensated for physical risks incurred [17].…”

“…Previous research, including of women recruited via MTurk, has shown that women are, in general, more altruistic than men [ 20 , 32 , 33 ]; our finding may extend that altruism to HIV research study participation without payment. Our interpretation of lower levels of interest in HIV research participation without pay among some minoritized racial and ethnic groups and persons with less formal education is that the lack of payment acts as a disincentive to participation, perhaps due to the study risks, a lack of trust in research, or because these groups are more likely to experience income insecurity and may lack the time to participate in activities that do not provide payment as compensation [ 17 , 34 ]. This corroborates our corollary finding that participants identified compensation for time as the most important form of payment for determining research participation.…”

“…While a framework can be useful for generating concepts, limited empirical data exist on payments provided in clinical research, and payments are not systematically tracked to permit comparison and reference between studies [ 1 , 16 ]. Further, most ethics committees do not have any published policies on payment practices, and research payment practices are often inconsistent and highly variable [ 3 , 13 , 16 , 17 ].…”

The unseen epidemic: trauma and loneliness in urban midlife women

“…A rudimentary coding guide was then developed and revised as data were collected [ 11 ]. The coding guide for themes included a definition, usage instructions, and examples of use [ 13 ]. After each pair coded five transcripts, the pairs were rearranged to prevent coding drift.…”

Motivators and barriers towards clinical research participation: A population-based survey from an Arab MENA country

“…Even though Jordan is a developing country (https://datahelpdesk.worldbank.org/ knowledgebase/articles/906519-world-bank-country-and-lending-groups) with a high unemployment rate (https://www.worldbank.org/en/country/jordan/overview), financial incentive was not among the top four motivators and was the least cited barrier for CR participation. Although monetary compensation [52] and self-benefits [49] have been reported in the literature as major facilitators to CR participation, our findings are more in agreement with those from high-income countries in the region such as Saudi Arabia, UAE, and Qatar [20,21,24]. One may argue that this sense of altruism in the Jordanian population has its moral roots, theological origin, or both, and manifested in welcoming a large number of refugees from conflict areas and may provide a sense of usefulness and satisfaction to the participants [11,53].…”