“Paid to Endure”: Paid Research Participation, Passivity, and the Goods of Work

Malmqvist, Erik

doi:10.1080/15265161.2019.1630498

Cited by 24 publications

(12 citation statements)

References 28 publications

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“…Indeed, even the ethics literature has fallen prey to this assumption, leading to the hotly debated question about whether clinical trials should be considered a form of work. 31–36 Given the relatively few participants who pursue Phase I trials occupationally, perhaps too much attention is paid to this small subset of healthy volunteers. Instead, ethical focus should be shifted to the question of what the paid research involvement of individuals with low-income and low-educational attainment might mean if they believe they can earn much higher annual incomes from serial participation than are truly possible.…”

Section: Discussionmentioning

confidence: 99%

Phase I trial compensation: How much do healthy volunteers actually earn from clinical trial enrollment?

et al. 2021

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Background/aims Financial compensation for research participation is a major focus of ethical concern regarding human subject recruitment. Phase I trials are sometimes considered to be a lucrative source of income for healthy volunteers, encouraging some people to become “professional guinea pigs.” Yet, little is known about how much these clinical trials actually pay and how much healthy volunteers earn from them. Methods As part of a mixed-methods, longitudinal study of healthy volunteers, we required participants to complete clinical trial diaries, or surveys that captured detailed information about screening and enrollment in Phase I trials. Over a 3-year period, participants provided information online or via telephone about each clinical trial for which they screened (e.g. the clinic name, the study’s therapeutic area, the length of the trial, the number of nights spent in the clinic, and the study compensation), and whether they qualified for trial inclusion. Clinical trial diaries generated data about whether participants continued to screen for and enroll in clinical trials and how much money they earned from their participation. Results 131 participants routinely completed clinical trial diaries or confirmed that they had not screened for any new clinical trials. Together, these participants screened for 1001 clinical trials at 73 research facilities during a 3-year period. Overall, the median clinical trial compensation was US$3070 (range = US$150–US$13,000). Participants seeking new healthy volunteer trials tended to screen for three studies per year, participate in one or two studies, and earn roughly US$4000 annually. Participants who were unemployed earned the most income from clinical trials compared to those with full-time or part-time jobs, and those individuals whom we label “occupational” participants because of their persistent pursuit of clinical trials earned more than people who screened occasionally. Notably, the median annual trial compensation was well below US$10,000 for all employment groups, and most occupational healthy volunteers also earned less than US$10,000 each year. The 10% of participants who earned the most had a median annual income of US$18,885 from clinical trials, and there was significant volatility in these individuals’ earnings from year to year. Conclusion Despite the perception that Phase I enrollment can generate significant earnings, it was exceedingly rare for anyone in this study to make more than US$20,000 in a single year, and unusual to earn even between US$10,000 and US$20,000. From an ethics perspective, individual trials might appear to unduly induce enrollment by offering significant sums of money, but given our findings, the larger problem for low-income participants may be the unrealistic perception that clinical trials alone could be a way of earning a living.

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Section: Discussionmentioning

confidence: 99%

Phase I trial compensation: How much do healthy volunteers actually earn from clinical trial enrollment?

et al. 2021

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“…The target articles in this issue of AJOB point to two novel responses: research participation as unfulfilling work (Malmqvist 2019) and coercion as subjection (Millum and Garnett 2019). The authors suggest that their concerns can be addressed by offering higher payments for research participation, an outcome we agree with.…”

mentioning

confidence: 87%

Filthy Lucre or Fitting Offer? Understanding Worries About Payments to Research Participants

Largent

Emanuel

Lynch

2019

The American Journal of Bioethics

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“…A voluntariedade, portanto, não parece ter sido afetada pelo incentivo monetário constituindo uma situação de influência indevida. Apesar disso, uma comparação entre a percepção dos 14 participantes que aceitaram participar e indicaram influência muita baixa Cabe ressaltar, no entanto, que existem múltiplos fatores que podem influenciar de maneira coercitiva a participação do indivíduo na pesquisa, e nem todos foram avaliados no presente estudo 33,34 . Além disso, os participantes do presente estudo foram pessoas voluntárias e, portanto, já inclinadas a participar de pesquisa em geral, potencial viés de seleção para a simulação de pesquisa.…”

Section: Me Todounclassified