Participation as Commodity, Participation as Gift

Chambers, Tod

doi:10.1162/152651601300169077

Cited by 14 publications

(11 citation statements)

References 2 publications

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“…These local level debates echo elements of international benefit sharing and ancillary care debates [ 10 , 33 ], and of recent debates among researchers at the Programme [ 22 ]. Some argue that research and research participation should primarily be based on goodwill, altruism, and partnership, and aim to avoid costs to participants and a commercial relationship [ 13 , 34 , 35 ]. Others argue that research should maximise participants’ benefits given the relative wealth of the research institution and multiple community needs [ 10 , 36 – 38 ].…”

Section: Discussionmentioning

confidence: 99%

“When they see us, it’s like they have seen the benefits!”: experiences of study benefits negotiations in community-based studies on the Kenyan Coast

et al. 2014

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BackgroundBenefit sharing in health research has been the focus of international debates for many years, particularly in developing countries. Whilst increasing attention is being given to frameworks that can guide researchers to determine levels of benefits to participants, there is little empirical research from developing countries on the practical application of these frameworks, including in situations of extreme poverty and vulnerability. In addition, the voices of those who often negotiate and face issues related to benefits in practice - frontline researchers and fieldworkers (FWs) - are rarely included in these debates. Against this background, this paper reports on experiences of negotiating research participation and benefits as described by fieldworkers, research participants and researchers in two community based studies.MethodsThe findings reported here are from a broader social science study that explored the nature of interactions between fieldworkers and participants in two community based studies on the Kenyan Coast. Between January and July 2010, data were collected using participant observation, and through group discussions and in-depth interviews with 42 fieldworkers, 4 researchers, and 40 study participants.ResultsParticipants highly appreciated the benefits provided by studies, particularly health care benefits. Fieldworkers were seen by participants and other community members as the gatekeepers and conduits of benefits, even though those were not their formal roles. Fieldworkers found it challenging to ignore participant and community requests for more benefits, especially in situations of extreme poverty. However, responding to requests by providing different sorts and levels of benefits over time, as inadvertently happened in one study, raised expectations of further benefits and led to continuous negotiations between fieldworkers and participants.ConclusionsFieldworkers play an important intermediary role in research; a role imbued with multiple challenges and ethical dilemmas for which they require appropriate support. Further more specific empirical research is needed to inform the development of guidance for researchers on benefit sharing, and on responding to emergency humanitarian needs for this and other similar settings.

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Section: Discussionmentioning

confidence: 99%

“When they see us, it’s like they have seen the benefits!”: experiences of study benefits negotiations in community-based studies on the Kenyan Coast

et al. 2014

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“…Second, the ethics of monetary payments in research are hotly debated within the broader bioethics literature (e.g., Lemmens & Elliot, 1999;Chambers, 2001;Grady, 2001;Moreno, 2001;Todd, 2001;Vanderpool, 2001), and specific concerns have been raised about the use of financial incentives in research with drug users. Key issues identified include the idea that such payments jeopardize informed consent by acting as an undue inducement, exploiting drug users' economic vulnerability and marginalization; some have also argued that paying drug users encourages and rewards illicit drug use (Fry & Dwyer, 2001;Buchanan et al, 2002;Ritter, Fry, & Swan, 2003;Sheldon, 2005;Fry et al, 2005Fry et al, , 2006.…”

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confidence: 99%

What Women Who Use Drugs Have to Say about Ethical Research: Findings of an Exploratory Qualitative Study

Bell

Salmon

2011

Journal of Empirical Research on Human Research Ethics

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Drug users are generally seen as a vulnerable population requiring special protection in research; however, to date there has been little empirical research into the ethics of research with illicit drug users. Moreover, the available research has tended to treat "drug users" as a homogeneous category, and has failed to consider potential gender differences in users' experiences. Drawing on focus groups with twenty-seven female drug users in Vancouver, Canada, this study examines women's experiences of research and what they see as ethical and respectful engagement. Many study participants talked about feeling dehumanized as a result of prior research participation. Women were critical of the assumption that drug users lack the capacity to take part in research, and affirmed the appropriateness of financial incentives. A variety of motivations for research participation were identified, including a desire for financial gain and altruistic concerns such as a desire to help others. These findings suggest that women drug users' views on ethical research differ from prevailing assumptions among institutional review boards about how research with such populations should proceed.

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“…10. Chambers (2001) argues that paying for research participation is wrong because it turns the gift of participation into a commodity. Kuczewski (2001) argues against paying for research participation because he believes this would endanger the professional integrity of biomedical research.…”

Section: Disclosure Statementmentioning

confidence: 99%

Exploitative, irresistible, and coercive offers: why research participants should be paid well or not at all

Belfrage

2016

Journal of Global Ethics

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This paper begins with the assumption that it is morally problematic when people in need are offered money in exchange for research participation if the amount offered is unfair. Such offers are called 'coercive', and the degree of coerciveness is determined by the offer's potential to cause exploitation and its irresistibility. Depending on what view we take on the possibility to compensate for the sacrifices made by research participants, a wish to avoid 'coercive offers' leads to policy recommendations concerning payment for participation. For sacrifices considered compensable, we ought to offer either no payment or payment at a level deemed fair, while for sacrifices deemed incompensable, we always ought to offer no payment because as compensation appears and increases, so too does coercion. This article provides a model for thinking of the way in which degrees of exploitativeness, irresistibility, and coerciveness interact with the size of the reward for compensable and incompensable cases. The conclusions are of particular relevance in contexts where potential research participants are poor or in other ways lack reasonably good options, as is often the case when international pharmaceutical companies or researchers based in the Global North place clinical trials in the Global South. ARTICLE HISTORY

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Participation as Commodity, Participation as Gift

Cited by 14 publications

References 2 publications

“When they see us, it’s like they have seen the benefits!”: experiences of study benefits negotiations in community-based studies on the Kenyan Coast

“When they see us, it’s like they have seen the benefits!”: experiences of study benefits negotiations in community-based studies on the Kenyan Coast

What Women Who Use Drugs Have to Say about Ethical Research: Findings of an Exploratory Qualitative Study

Exploitative, irresistible, and coercive offers: why research participants should be paid well or not at all

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