A global survey of <scp>HIV</scp>‐positive people's attitudes towards cure research

Simmons, Ruth; Kall, Meaghan; Collins, Simon; Cairns, Gus; Taylor, Stephen; Nelson, Mark; Fidler, Sarah; Porter, Kholoud; Fox, Julie

doi:10.1111/hiv.12391

Cited by 46 publications

(67 citation statements)

References 13 publications

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“…The survey contained 38 questions and was estimated to take 10–15 minutes. The questions were modeled on a similar HIV-1 cure survey and tailored for genital herpes infection; the content of the survey is provided in the Supplement (10). The survey opened with these statements: “HSV Cure studies are a new area of research that will attempt to remove the herpes simplex virus from the body, or to completely inactivate it.…”

Section: Methodsmentioning

confidence: 99%

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Attitudes and Willingness to Assume Risk of Experimental Therapy to Eradicate Genital Herpes Simplex Virus Infection

et al. 2016

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Background Current treatment of genital herpes is focused on ameliorating signs and symptoms but is not curative. However, as potential HSV cure approaches are tested in the laboratory, we aimed to assess the interest in such studies by persons with genital herpes, and the willingness to assume risks associated with experimental therapy. Methods We constructed an anonymous online questionnaire that was posted on websites that provide information regarding genital herpes. The questions collected demographic and clinical information on adults who self-reported as having genital herpes, and assessed attitudes toward and willingness to participate in HSV cure clinical research. Results 711 participants provided sufficient responses to be included in the analysis. 66% were women; the median age was 37 years, and the median time since genital HSV diagnosis was 4.7 years. The willingness to participate in trials increased from 59.0% in Phase 1 to 68.5% in Phase 2 and 81.2% in Phase 3 trials, and 40% reported willingness to participate even in the absence of immediate, personal benefits. The most desirable outcome was the elimination of risk for transmission to sex partner or neonate. The mean perceived severity of receiving a diagnosis of genital HSV-2 was 4.2 on a scale of 1 to 5. Conclusions Despite suppressive therapy available, persons with genital herpes are interested in participating in clinical research aimed at curing HSV, especially in more advanced stages of development.

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Section: Methodsmentioning

confidence: 99%

“…An assessment in HIV-1 seropositive individuals in the United Kingdom showed high interest in HIV-1 cure studies, and willingness to take experimental therapies in the absence of personal benefit (10). Research activity toward an HSV cure has recently accelerated (11–14).…”

Section: Introductionmentioning

confidence: 99%

Attitudes and Willingness to Assume Risk of Experimental Therapy to Eradicate Genital Herpes Simplex Virus Infection

et al. 2016

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“…[3][4][5] Altruism is, of course, just one of many factors that may motivate individuals to participate in research. 6 Yet, these other motivations may be significantly less potent in HIV cure research than in other contexts.…”

Section: Altruism In Hiv Cure Researchmentioning

confidence: 99%

For love and money: the need to rethink benefits in HIV cure studies

Largent

2016

J Med Ethics

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HIV cure research holds great potential to eradicate HIV, but the benefit to early trial participants is likely to be small. Moreover, participation carries unknown and possibly significant risks to research participants. This is the risk:benefit ratio challenge of HIV cure research. Although it may be consensual and rational for individuals to participate in HIV cure research that requires a degree of self-sacrifice, I argue that altruistic research participants can be exploited when the benefits to them are unfair. Transactions of this kind should not be prohibited, as that would be unacceptably paternalistic and thwart socially valuable research. Nevertheless, we should not simply accept these transactions but must work to reduce or eliminate exploitation by enhancing the benefits so that research participants are better off by their own lights. Offering payment in HIV cure research is the optimal way to enhance benefits to research participants and to make the risk:benefit ratio more favourable. I argue for a payment-as-benefit model against the standard view, assumed in ethics and policy, that offers of payment are not legitimate benefits.

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“…Simmons et al's [1] paper 'A global survey of HIVpositive people's attitudes towards cure research' brings to the fore the widespread debate surrounding ethical issues concerning HIV cure-related clinical trials (HCRCTs). The importance of this debate is attested to by a dedicated issue of the Journal of Medical Ethics [2].…”

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confidence: 99%

Importance of the patient‐physician interaction in assessing acceptability of HIV cure trials

et al. 2017

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A global survey of HIV‐positive people's attitudes towards cure research

Abstract: Cure research was highly acceptable to the PLHIV surveyed. Most individuals would accept risks, including TI, even in the absence of personal benefit. An optimal cure would improve health and minimize onward transmission risk.

Cited by 46 publications

References 13 publications

Attitudes and Willingness to Assume Risk of Experimental Therapy to Eradicate Genital Herpes Simplex Virus Infection

Attitudes and Willingness to Assume Risk of Experimental Therapy to Eradicate Genital Herpes Simplex Virus Infection

For love and money: the need to rethink benefits in HIV cure studies

Importance of the patient‐physician interaction in assessing acceptability of HIV cure trials

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