Payment to healthy volunteers in clinical research: the research subject's perspective

Abstract

Although there is much discussion regarding the ethics of making payments to healthy volunteers for participating in clinical research, little data are available from the point of view of the volunteers as to what they would consider to be fair payment. The objectives of this study were to determine healthy volunteers' estimates of appropriate payments for participation in hypothetical clinical trials in order to explore the reasoning behind these estimates and to examine the association between volunteer demographics and payment expectations. Sixty participants with previous experience as healthy volunteers in research studies were presented with four hypothetical studies and interviewed about their impressions of burden and risks involved in the studies. They were also asked to estimate an appropriate payment to the volunteers for each of the studies. For each of the studies, the payment estimates made by the participants varied over a wide range. However, each individual tended to be consistent in estimate placement within this range. No demographic factor was significantly associated with the estimated study payment. Subjects frequently mentioned risk and logistical burden as factors that should determine payment levels. Healthy volunteer subjects appear to have individualized yet consistent methods of arriving at estimates of payments for participating in clinical studies. These estimates are based on each subject's perception of study burden and associated risk.

Figure 1. Cumulative proportion of volunteers stating expected payment amounts for each study

While payment estimates were significantly lower for the Investigational Drug Study, the other three studies were almost indistinguishable with the exception that the Malaria Challenge study yielded a few significantly higher estimates than any of the other studies.

Figure 2. Estimated payment by each volunteer for each of the four hypothetical studies

Lines connect the estimates of one participant. There is more variation in subjects’ estimates within a particular study than variation in any one subject’s estimates in relation to other participant’s estimates across the four studies.