For love or money? An exploratory study of why injecting drug users participate in research

Fry, Craig Lindsay; Dwyer, Robyn

doi:10.1046/j.1360-0443.2001.969131911.x

Cited by 147 publications

(128 citation statements)

References 19 publications

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“…Reasons for participation and nonparticipation found here are broadly similar to those that others have found; self interest (knowledge or to improve or stabilise health), altruistic reasons (Fry & Dwyer, 2001;Madsen et al, 2002), and for the health benefits of taking new drugs (Gammelgaard et al, 2004;Madsen et al, 2002;Wilcox & Schroer, 1994). The motivation to participate in order to be treated by experts (Gammelgaard et al, 2004) was not found, most likely because patients were already attending a specialist centre.…”

supporting

confidence: 58%

“…In the context of intravenous drug use, Fry and Dwyer (2001) have called for examination of the suitability of various theoretical frameworks to explain research respondents' motivations for participation, and the relative weight respondents place upon these motivations. One approach to conceptualise motivations in the context of clinical research participation in a defined patient group is to look more widely at theories of risk perception and risk management.…”

Section: Many Investigations Of Patients' Responses To Clinicians' Rementioning

confidence: 99%

“…In the context of participation in a particular clinical research project, participants' stated reasons for their involvement are common across diverse conditions, for example altruism amongst intravenous drug users (Fry & Dwyer, 2001) and those with cancer (Madsen et al, 2002;Snowdon et al, 1998). …”

Section: Many Investigations Of Patients' Responses To Clinicians' Rementioning

confidence: 99%

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Trials and tribulations: Understanding motivations for clinical research participation amongst adults with cystic fibrosis

Lowton

2005

Social Science & Medicine

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supporting

confidence: 58%

Section: Many Investigations Of Patients' Responses To Clinicians' Rementioning

confidence: 99%

Section: Many Investigations Of Patients' Responses To Clinicians' Rementioning

confidence: 99%

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Trials and tribulations: Understanding motivations for clinical research participation amongst adults with cystic fibrosis

Lowton

2005

Social Science & Medicine

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“…This literature has identified the values and characteristics of individual participants (e.g. Fry & Dwyer 2001), people's perceptions of the benefits of participation, such as the possibility of securing better treatment and specialist attention (Slevin, Mossman, Bowling, et al 1995;Wendler et al, 2008), risks, costs and benefits of participation (Lowton 2005) and aspects of information (Ellis, 2000: Jenkins andFallowfield, 2000 ) that are relevant to such decisions. But participation is distinct from cooperation.…”

Section: Introductionmentioning

confidence: 99%

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

Dixon‐Woods

Tarrant

2009

Social Science & Medicine

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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

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“…In previous studies altruism, citizenship and activism, and considerations of personal benefit or economic gain have been shown to figure prominently. 18,19 This points to the need for researchers to pay particular attention to explaining risk and ensuring that parents do not underestimate it in the interests of serving the goals of science.…”

Section: Discussionmentioning

confidence: 99%

Attitudes of Health-Care Providers towards Research with Newborn Babies

et al. 2004

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CONTEXT:By providing information and possibly shaping parents' preferences, health-care providers are thought to play a critical role in parental decisions to enroll their infants in research. Yet, little is known about health-care providers' beliefs about research with newborns. Previous studies suggest that parents and health-care providers are often at odds regarding attitudes towards research. OBJECTIVE:To examine the attitudes of health-care providers concerning the acceptability of research with newborn babies and the degree of researchrelated risk to which they would be willing to expose their own infant. These findings were compared with a previous study of parental attitudes. DESIGN, SETTING AND PARTICIPANTS:A survey (pretested questionnaire with 20 scaled items and five case scenarios) of 50 doctors and 64 nurses conducted in a large tertiary care center in western Canada. RESULTS:Study limitations were a response rate of 64.5% among nurses but only 22% among physicians. Both doctors and nurses were strongly supportive of research with newborns, but nurses were more averse to exposing infants to risk. Only 76.0% of nurses, compared to 92.2% of physicians, agreed that informed consent should be sought for all forms of research. When results were compared with parental perceptions, health-care providers were more likely to believe that research should be conducted for the good of all babies. Parents were generally less aware of the existence of an approval process for research in general. In responding to hypothetical scenarios with risk and direct benefit, parents were less willing to enroll their infants than were health-care providers. Approximately 30% of both groups would be willing to enroll their infants in a study involving moderate risk and no direct benefit. CONCLUSIONS:Views of nurses, physicians, and parents regarding research with newborns are different. Overall, there is support for research; however, nurses are more likely to never enroll their own baby and enroll babies into minor studies without consent.

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For love or money? An exploratory study of why injecting drug users participate in research

Abstract: IDU motivations for research involvement appear to be multi-dimensional, rarely motivated by economic gain alone, and not necessarily defined by direct benefits or gains to themselves. These findings are relevant to the question of IDU research payment ethics.

Cited by 147 publications

References 19 publications

Trials and tribulations: Understanding motivations for clinical research participation amongst adults with cystic fibrosis

Trials and tribulations: Understanding motivations for clinical research participation amongst adults with cystic fibrosis

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

Attitudes of Health-Care Providers towards Research with Newborn Babies

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