A Review of Paying Research Participants: It's Time to Move beyond the Ethical Debate

Ripley, Elizabeth

doi:10.1525/jer.2006.1.4.9

Cited by 45 publications

(46 citation statements)

References 52 publications

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“…The majority of participants were motivated to join the study for altruistic or financial reasons. Our findings confirm that previous research on willingness to participate in HIV-prevention trials may apply to participants in a microbicide trial [7,10,11] and add to the body of literature showing that, although compensation plays a part in motivation to enroll and return for follow-up, a combination of factors that also include altruism and personal convenience is at play [28,29]. …”

Section: Discussionsupporting

confidence: 88%

The Motivations and Experiences of Young Women in a Microbicide Trial in the USA and Puerto Rico

Giguere¹,

Zimet²,

Kahn³

et al. 2013

WJA

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Young women are an important target group in microbicide research, yet little is known about why they participate and stay in microbicide trials. Our study examined motivations for participating in a Phase I microbicide trial among 61 women ages 18 - 24 years in the continental USA and Puerto Rico. We also examined their perspectives on study participation. Participants underwent a semi-structured in-depth interview in which they were asked about factors that motivated enrollment and their experiences while participating. They also completed a Web-based Computer Assisted Self Interview in which they were asked to rate study burden (1 = low to 4 = high). Factors that motivated enrollment were altruism (29%), compensation (17%), a combination of altruism and compensation (37%) and free medical exams (17%). Factors that encouraged participants to stay in the study were study staff (95%), confirmation of good health (41%), and the opportunity to learn about their bodies (17%). Mean ratings of study burden ranged from 1.83 (having to travel to site) to 2.41 (colposcopy), indicating that participants were not highly bothered by visits or procedures. Although Phase I trials require invasive procedures, participants were not highly bothered by them and recognized them as necessary. Good relationships with staff and clear information about how procedures contribute to study goals may encourage participants to remain in trials. Young women may be motivated to enter microbicide trials by stressing the role they will play in discovering better HIV-prevention methods and highlighting the comprehensive preventive exams they will receive.

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Section: Discussionsupporting

confidence: 88%

The Motivations and Experiences of Young Women in a Microbicide Trial in the USA and Puerto Rico

Giguere¹,

Zimet²,

Kahn³

et al. 2013

WJA

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show abstract

“…The positive and negative impact of payment for study participation in actual studies have been shown for survey (Coogan & Rosenberg, 2004; Doody et al, 2003; Gilbart & Kreiger, 1998; Little & Davis, 1984; Parkes et al, 2000; Perneger, Etter, & Rougemont, 1993), HIV risk reduction (Deren et al, 1994), and substance abuse studies (Festinger et al, 2005; Fry & Dwyer, 2001). The ethical debate regarding paying participants is also not new and laws and guidelines establish the concept that payment should not be coercive or undue, as has been extensively discussed (Grady, 2005; Permuth-Wey & Borenstein, 2009; Ripley, 2006). Payment practices vary for similar national studies (Grady, 2005) but little empirical data exists to determine how investigators choose payment and how IRB members review payment.…”

mentioning

confidence: 99%

Why Do We Pay? A National Survey of Investigators and IRB Chairpersons

Ripley

Macrina

Markowitz

et al. 2010

Journal of Empirical Research on Human Research Ethics

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The principle that payment to participants should not be undue or coercive is the consensus of international and national guidelines and ethical debates; however, what this means in practice is unclear. This study determined the attitudes and practices of IRB chairpersons and investigators regarding participant payment. One thousand six hundred investigators and 1900 IRB chairpersons received an invitation to participate in a web-based survey. Four hundred and fifty-five investigators (28.3%) and 395 IRB chairpersons (18.6%) responded. The survey was designed to gather considerations that govern payment determination and practical application of these considerations in hypothetical case studies. The survey asked best answer, multiple choice, and open text questions. Short hypothetical case scenarios where presented, and participants were asked to rate factors in the study that might impact payment and then determine their recommended payment. A predictive model was developed for each case to determine factors which affected payment. Although compensation was the primary reason given to justify payment by both investigators and IRB chairpersons, the cases suggested that, in practice, payment is often guided by incentive, as shown by the impact of anticipated difficulty recruiting, inconvenience, and risk in determining payment. Payment models varied by type of study. Ranges for recommended payments by both groups for different types of procedures and studies are presented.

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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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A Review of Paying Research Participants: It's Time to Move beyond the Ethical Debate

Cited by 45 publications

References 52 publications

The Motivations and Experiences of Young Women in a Microbicide Trial in the USA and Puerto Rico

The Motivations and Experiences of Young Women in a Microbicide Trial in the USA and Puerto Rico

Why Do We Pay? A National Survey of Investigators and IRB Chairpersons

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

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