Improving Informed Consent and Enhancing Recruitment for Research by Understanding Economic Behavior

Dunn, Laura B.; Gordon, Nora

doi:10.1001/jama.293.5.609

Cited by 77 publications

(55 citation statements)

References 56 publications

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“…Some commentators believe that the act of paying research subjects is wrong (7), maybe even coercive, while others find it an acceptable and perhaps necessary part of recruitment for clinical investigation (8,9); others see payment of at least healthy subjects as fair and appropriate (10,11). In addition, only minimal guidance exists to help investigators determine whether or how much to pay participants in a particular study.…”

mentioning

confidence: 99%

Payment of clinical research subjects

Grady¹

2005

Journal of Clinical Investigation

290

340

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Offering payment to clinical research subjects, in an effort to enhance recruitment by providing an incentive to take part or enabling subjects to participate without financial sacrifice, is a common yet uneven and contentious practice in the US. Concern exists regarding the potential for payment to unduly influence participation and thus obscure risks, impair judgment, or encourage misrepresentation. Heightening these concerns is the participation not only of adults but also of children in pediatric research trials. Thorough assessment of risks, careful eligibility screening, and attention to a participant's freedom to refuse all serve to reduce the possibility of compensation adversely affecting the individual and/or the study. Institutional review boards currently evaluate payment proposals with minimal guidance from federal regulations. Here, reasons for providing payment, payment models, ethical concerns, and areas for further research are examined.

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confidence: 99%

Payment of clinical research subjects

Grady¹

2005

Journal of Clinical Investigation

290

340

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“…As other community research has found, incentives can serve as leverage with those living in poverty in the DTES, making it difficult for individuals to refuse to participate in research even where ethical concerns exist (Damon et al, 2017). This type of inducement runs counter to conventional research ethics guidelines (Dunn & Gordon, 2005;Medical Research Council of Canada, 1987;Ripley, 2006), which assert that financial gain should not be a primary motivation for participation in research. These findings speak to the need to address economic deprivation among this population, alongside ensuring research results in material improvements for marginalized communities.…”

Section: "Where Does All This Information Go?" the Practice Of (Un)inmentioning

confidence: 99%

“We’ve Been Researched to Death”: Exploring the Research Experiences of Urban Indigenous Peoples in Vancouver, Canada

Goodman

Morgan

Kuehlke

et al. 2018

iipj

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The belief among many Indigenous Peoples of being over-researched, often through questionable research practices, has generated mistrust towards researchers. Despite growing critiques of conventional research practices, understanding of Indigenous Peoples' contemporary research experiences remains limited. The research this article describes was undertaken by a community organization led by Indigenous Peoples who use illicit substances. Community researchers facilitated talking circles to explore the research experiences of peers living in a highly-researched inner-city neighbourhood in Vancouver, Canada. While participants reported distrust towards researchers, this wariness did not preclude participation in research given a context of extreme poverty. Participants noted lack of transparency in research and perceived research as having little benefit to their community. We argue for increased support for Indigenous-led approaches to research that emphasize community concerns and meaningful community participation.

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“…Disagreement exists regarding the ethicality of offering an incentive to research participants, with some scholars decrying its use and others viewing it as appropriate in at least some circumstances (31)(32)(33)(34). Concern has been voiced, in particular, that an incentive could be coercive, that is, threaten the individual with physical, psychological, or social harm in order to compel her to do something, or that the incentive could serve as an undue inducement by being so attractive that potential participants might ignore potential risks associated with participation or be unable to exercise proper judgment as a result (1,35,36).…”

Section: Incentive Issuesmentioning

confidence: 99%

Hiv Prevention Research Among Severely Mentally Ill Latinas: An Examination of Ethical Issues in the Context of Gender and Culture

Loue

2007

Acta bioeth.

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Abstract:We examine the interplay between ethical issues, gender, and culture in the context of our study which examines the context of HIV risk among Puerto Rican and Mexican women with schizophrenia, bipolar disorder, and participants, selection and recruitment, informed consent and decisional capacity, incentives, institutional and peer review matters, data presentation, and community needs. Ethical obligations to research participants and the relevant community are discussed. Key words: latinas, HIV, ethics LA INVESTIGACIÓN DE LA PREVENCIÓN DE VIH EN MUJERES LATINAS CON ENFERMEDAD MENTAL GRAVE: EVALUACIÓN DE CUESTIONES ÉTICAS EN EL CONTEXTO DEL GÉNERO Y LA CULTURAResumen: El presente estudio examina la interrelación entre los temas éticos, el género y la cultura en el contexto de riesgo a VIH en mujeres de Puerto Rico y México con esquizofrenia, trastorno bipolar y depresión mayor. El género reclutamiento, consentimiento informado y capacidad de tomar decisiones, incentivos, cuestiones institucionales y de evaluación por pares, presentación de información y necesidades de la comunidad. Se discuten las obligaciones éticas para con los participantes en el estudio y la comunidad relevante. Palabras clave: latinas, VIH, ética PESQUISA SOBRE A PREVENÇÃO DO HIV EM MULHERES LATINAS COM ENFERMIDADE MENTAL GRAVE: UM EXAME DE QUESTÕES ÉTICAS NO CONTEXTO DO GÊNERO E DA CULTURAResumo: O presente estudo examina a interrelação, dentre os temas éticos, do gênero e da cultura em um contexto de risco ao HIV, junto a mulheres portadoras de esquizofrenia, transtorno bipolar e depressão profunda, de Porto Rico e seleção e recrutamento, consentimento informado e capacidade de tomada de decisões, incentivos, questões institucionais e de avaliação de pares, apresentação da informação e necessidades da comunidade. Discute-se as obrigações éticas dos participantes do estudo e da comunidade relevante.

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Improving Informed Consent and Enhancing Recruitment for Research by Understanding Economic Behavior

Cited by 77 publications

References 56 publications

Payment of clinical research subjects

Payment of clinical research subjects

“We’ve Been Researched to Death”: Exploring the Research Experiences of Urban Indigenous Peoples in Vancouver, Canada

Hiv Prevention Research Among Severely Mentally Ill Latinas: An Examination of Ethical Issues in the Context of Gender and Culture

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