What risk of death would people take to be cured of HIV and why? A survey of people living with HIV

Murray, Benjamin R.; Kratka, Allison; Scherr, Karen A.; Eyal, Nir; Blumenthal‐Barby, Jennifer; Freedberg, Kenneth A.; Kuritzkes, Daniel R.; Hammitt, James K.; Edifor, Regina; Katz, Madelaine; Pollak, Kathryn I.; Zikmund‐Fisher, Brian J.; Halpern, Scott D.; Barks, Mary C.; Ubel, Peter A.

doi:10.1016/s2055-6640(20)30052-2

Cited by 12 publications

(14 citation statements)

References 32 publications

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“…However, one risk that the vast majority were not ready to take was to interrupt ART even with close physician monitoring. This finding is different from other studies in the developed world 24 , 26 where majority of PLWH are willing to stop ART for cure research in the context of regular physician monitoring. However, our findings mimic those from a South African study where participants would only agree to an ATI if success was guaranteed.…”

Section: Discussioncontrasting

confidence: 99%

“…Few studies have evaluated the risks patients are willing to tolerate and motivations for participating in HIV cure research. These have mostly been done in the developed world, 24 , 25 , 26 , 27 with few looking at patient perspective on cure risks in Africa. 28 Therefore, it is important to ascertain the attitudes of people living with HIV (PLWH) in Africa on cure, and determine their willingness to accept risks towards achieving a cure.…”

Section: Introductionmentioning

confidence: 99%

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Unwillingness of patients in Ghana to interrupt antiretroviral therapy for HIV cure research

Bonney

Lamptey

Aboagye

et al. 2021

Journal of Virus Eradication

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Section: Discussioncontrasting

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Unwillingness of patients in Ghana to interrupt antiretroviral therapy for HIV cure research

Bonney

Lamptey

Aboagye

et al. 2021

Journal of Virus Eradication

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“…Given the altruistic nature of challenge trial participation—with volunteers required to take on personal risks and costs to achieve societal benefits—it would be ideal from an ethical perspective if volunteers demonstrated highly altruistic goals, values and preferences. To date, few studies have examined why healthy volunteers consent to research with net risks and burdens to themselves, or whether their goals and values are compatible with ethical participation 16,17,22,23,24,25 . To assess whether a group of individuals who proactively declared their intent to volunteer to participate in a COVID-19 challenge trial meets these conditions, we conducted the first large-scale evaluation of characteristics of potential challenge trial volunteers.…”

Section: Tablementioning

confidence: 99%

Characterizing altruistic motivation in potential volunteers for SARS-CoV-2 challenge trials

Schmit²,

Darton

et al. 2021

Preprint

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In human challenge trials, volunteers are deliberately infected with a pathogen to accelerate vaccine development and answer key scientific questions. In the U.S., preparations for challenge trials with the novel coronavirus are complete, and in the U.K., challenge trials have recently begun. However, ethical concerns have been raised about the potential for invalid consent or exploitation. These concerns largely reflect worries that challenge trial volunteers may be unusually risk-seeking or too economically vulnerable to refuse the payments these trials provide, rather than being motivated primarily by altruistic goals. We conducted the first large-scale survey of intended human challenge trial volunteers and found that SARS-CoV-2 challenge trial volunteers exhibit high levels of altruistic motivations without any special indication of poor risk perception or economic vulnerability. Findings indicate that challenge trials with the novel coronavirus can attract volunteers with background conditions, attitudes, and motivations that should allay key ethical concerns.

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“…To date, few studies have examined why healthy volunteers consent to research with net risks and burdens to themselves, or whether their goals and values are compatible with ethical participation [24][25][26][27][28][29][30]. Stunkel and Grady's [23] meta-analysis of the literature on the motivations of healthy volunteers mainly investigated studies conducted in the United States and Europe.…”

Section: Introductionmentioning

confidence: 99%

Characterizing altruistic motivation in potential volunteers for SARS-CoV-2 challenge trials

Marsh

Magalhães²,

Peeler³

et al. 2022

PLoS ONE

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In human challenge trials (HCTs), volunteers are deliberately infected with an infectious agent. Such trials can be used to accelerate vaccine development and answer important scientific questions. Starting early in the COVID-19 pandemic, ethical concerns were raised about using HCTs to accelerate development and approval of a vaccine. Some of those concerns pertained to potential exploitation of and/or lack of truly informed consent from volunteers. Specific areas of concern arose around individuals who may be unusually risk-seeking or too economically vulnerable to refuse the payments these trials provide, as opposed to being motivated primarily by altruistic goals. This pre-registered study is the first large-scale survey to characterize people who, early in the pandemic, expressed interest and intention to volunteer to participate in COVID-19 HCTs. We found that individuals expressing interest in SARS-CoV-2 HCTs exhibit consistently altruistic motivations without any special indication of poor risk perception or economic vulnerability. In finding that, early in the pandemic, COVID-19 HCTs were able to attract volunteers whose values align with the nature of these trials, and who are not unusually vulnerable to exploitation, this study may allay some ethical concerns about the volunteers interested in participating in such trials.

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What risk of death would people take to be cured of HIV and why? A survey of people living with HIV

Cited by 12 publications

References 32 publications

Unwillingness of patients in Ghana to interrupt antiretroviral therapy for HIV cure research

Unwillingness of patients in Ghana to interrupt antiretroviral therapy for HIV cure research

Characterizing altruistic motivation in potential volunteers for SARS-CoV-2 challenge trials

Characterizing altruistic motivation in potential volunteers for SARS-CoV-2 challenge trials

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