Why do people cooperate with medical research? Findings from three studies

Abstract

In this paper, we distinguish decisions about cooperation from decisions about research participation. We offer an empirical and theoretical exploration of why people in three different UK-based medical research projects chose to cooperate. Data analysis of the accounts of 128 participants across the three studies was based on the constant comparative method.Participants' cooperation was engaged by a perception that they would be contributing to the 'public good', but they also wanted to justify their decision as sensible and safe. Critical to their cooperation was their belief that researchers would fulfil their side of the cooperative bargain, by not exposing participants to risks of harm or exploitation. Although participants were generally unaware of the details of the regulatory regime for research, they demonstrated a generalised reliance on regulation as a feature of everyday life that would provide a safe context for cooperation. In their assessment of particular projects, participants made judgements about whether to cooperate based on more specific cues, which acted as signs to assure them that researchers shared their cooperative intentions. These cues included organisational and professional credentials, the role identities and perceived trustworthiness of those involved in recruiting to research, and visible signs of reasonable practice mandated by regulatory systems. Thus participants drew on their understandings of an institutional field that was much broader than that of research alone. We propose that the social organisation of research is fundamental to the judgements people make about cooperation with research. Cooperation may be a more useful way of thinking about how people come to engage in collaboratively oriented actions such as research participation, rather than currently dominant individualistic models. Attention to the institutional context of research is critical to understanding what makes cooperation possible, and has important implications for the design of regulatory regimes for research.3

An investigation of patients’ motivations for their participation in genetics-related research

“…Thus, although most of our interviewees claimed they would, or indeed should, participate in research to help future patients including their family, in the main they said that they were only prepared to engage in these activities if this did not put their health needlessly at risk,17 22 23 if they might also benefit or if they had exhausted all therapeutic options. These findings recapitulate those of an earlier study that found respondents favour recruitment (without their consent) to hypothetical research studies that involve experimental drugs that their doctor thinks “might help them” rather than to placebo-based randomised controlled trials and also rate the less invasive interventions as more acceptable 24.…”

“…These findings recapitulate those of an earlier study that found respondents favour recruitment (without their consent) to hypothetical research studies that involve experimental drugs that their doctor thinks “might help them” rather than to placebo-based randomised controlled trials and also rate the less invasive interventions as more acceptable 24. Dixon-Woods and colleagues similarly observed that while the parents in their study voiced communitarian motives for research participation, they were willing to donate their child’s tissue for research only if they perceived there was no risk to their child 2 23. Our data similarly imply that there are limits to research participants’ altruism—things they will not do or risks they will not take to help others—suggesting, as Haimes and Whong-Barr contend, that the truly altruistic participant who will run any number of risks and expend a large amount of effort purely for others’ benefit is, indeed, very rare 15…”

“…Dixon-Woods and Tarrant23 have recently argued that we need to see research as social action, involving cooperation between researchers and participants. They argue that cooperative research is a form of “joint action”—a dynamic form of collaborative social interaction, in which the actions of both parties and the relationships that exist, or are created, between them are fundamentally important.…”

Expectation of Volunteers Towards the Vaccine Efficacy of the Prime-Boost HIV Vaccine Phase III Trial During Unblinding

“…5 Similarly, British participants in another study expressed the benefit of having contributed to the public good, regardless of any benefit to them. 11 Conversely, in other studies, participants indicated that whatever their level of knowledge was, they would struggle to make sense of their participation in trials that randomize their allocation to vaccine or placebo. 12 Clear and accurate patient information is important in clinical trials.…”

Influences on the uptake of diabetes screening: a qualitative study in primary care

“…29 However, these findings about the practicalities of the OGTT are likely to be directly translatable to the use of this test in routine practice.…”