More than the money: A review of the literature examining healthy volunteer motivations

Abstract

Background and Objective Few existing data report the motivations of healthy volunteers in clinical research trials. Some worry that volunteers consider only financial motivations. This study summarized and analyzed existing empirical research on self-reported motivations of healthy volunteers participating in studies not intended to offer benefit from participation. Study Selection A systematic PubMed search was conducted. Inclusion criteria captured English-language empirical studies on the self-reported motivations, reasons, or factors influencing the decision of healthy volunteers to enroll in clinical research. Twelve studies involving more than 2000 healthy volunteers met the criteria and were included in this review. Data Extraction Independent review by the authors and extraction of information about the sample, methodology and objective of the motivations study, description of the clinical trial and whether participation was actual or hypothetical, reported primary and secondary motivations of the healthy volunteers, risk evaluation, and reported differences in motivations related to sociodemographic variables. Results This review showed that although financial reward is the primary motivation for healthy volunteers to participate in clinical trials, financial motivations are one among many other reported motivations, including contributing to science or the health of others, accessing ancillary healthcare benefits, scientific interest or interest in the goals of the study, as well as meeting people and curiosity. Volunteers consider risk when making a decision about participation. Conclusions Although financial incentives are important in recruiting healthy volunteers, their motivations are not limited to financial motivations. Further research is needed to examine motivations in different contexts and countries, the decision making of healthy volunteers, and the dynamics of repeat participation.

Motivations of participants in the citizen science of microbiomics: data from the British Gut Project

“…Prosocial motivations have been shown to underlie participation in biomedical research in the past, 13 although scholarship on this topic has been criticized as overemphasising altruistic behaviour. 14 Against this backdrop, the notion of solidarity seems to better accommodate the simultaneity of self-interest and concern for others that has been found to motivate research participation in many studies.…”

The feasibility of determining the effectiveness and cost-effectiveness of medication organisation devices compared with usual care for older people in a community setting: systematic review, stakeholder focus groups and feasibility randomised controlled trial

“…16,34 The primary motivations for trial participation by older people are altruism, social engagement and anticipated personal benefits. [103][104][105] These mirror precisely the findings of the pre-study focus groups and post-study discussions with participants. Participants cited study involvement as an opportunity to payback the NHS, and with 57% of participants in the MOD RCT group remaining on MODs and 29% of the usual-care group being initiated into MODs post-study completion, there is a clear element of personal benefit.…”

“…Previous research has cited inconvenience/burden of trial involvement and risk of harm. [103][104][105] The nature of the intervention is such that potential participants are unlikely to have perceived it as a high risk of harm. It therefore follows that the trial processes were considered a burden that outweighed the potential benefits.…”

Conhecimento e voluntariedade para participação em pesquisas: um estudo descritivo com participantes de um ensaio clínico

“…Apesar de vários autores insistirem que esse fator é mais comum nos países em desenvolvimento 54 , estudos demonstram que ele é encontrado em sujeitos de estudos em todo o mundo 55,56 , inclusive no Brasil 57 . Como implicação ética dessa influência, destacase que a busca por tratamento médico pode ser um indício da precariedade de serviços de saúde disponíveis para a população, impelindo esses participantes a fazerem parte de pesquisas clínicas 13 .…”