Skip to main content

Willingness to participate and take risks in HIV cure research: survey results from 400 people living with HIV in the US.

Publication ,  Journal Article
Dubé, K; Evans, D; Sylla, L; Taylor, J; Weiner, BJ; Skinner, A; Thirumurthy, H; Tucker, JD; Rennie, S; Greene, SB
Published in: J Virus Erad
January 1, 2017

INTRODUCTION: Participation in early-phase HIV cure studies includes clinical risks with little to no likelihood of clinical benefit. Examining the willingness of people living with HIV to participate is important to guide study design and informed consent. Our study examined the overall willingness of people living with HIV to participate in HIV cure research in the US, focusing on perceived risks and benefits of participation. METHODS: We undertook an online survey of adults living with HIV in the US. Survey questions were developed based on previous research and a scoping review of the literature. We quantitatively assessed individuals' perceived risks and benefits of HIV cure-related research and respondents' willingness to participate in different modalities of HIV cure studies. RESULTS: We recruited 409 study participants of whom 400 were eligible for the study and were included in the analysis (nine were not eligible due to self-declared HIV-negative status). We found >50% willingness to participate in 14 different types of HIV cure studies. Perceived clinical benefits and social benefits were important motivators, while personal clinical risks appeared to deter potential participation. Roughly two-thirds of survey respondents (68%) indicated that they were somewhat willing to stop treatment as part of HIV cure research. In the bivariate models, females, African Americans/blacks, Hispanics, individuals in the lowest income bracket, people living with HIV for longer periods of their lives, and people who were self-perceived 'very healthy' were less willing to participate in certain types of HIV cure studies than others. Multivariate results showed the perceived benefits (adjusted odds ratios >1) and perceived risks (adjusted odds ratios <1) acted as potential motivators and deterrents to participation, respectively. CONCLUSION: Our study is the first attempt to quantify potential motivators and deterrents of participation in HIV cure research in the US using perceived risks and benefits. The results offer guidance to HIV cure researchers and developers of interventions about the beneficial and detrimental characteristics of HIV cure strategies that are most meaningful to people living with HIV. The study also highlights new potential lines of inquiry for further social science and ethics research.

Duke Scholars

Published In

J Virus Erad

ISSN

2055-6640

Publication Date

January 1, 2017

Volume

3

Issue

1

Start / End Page

40 / 50.e21

Location

England
 

Citation

APA
Chicago
ICMJE
MLA
NLM
Dubé, K., Evans, D., Sylla, L., Taylor, J., Weiner, B. J., Skinner, A., … Greene, S. B. (2017). Willingness to participate and take risks in HIV cure research: survey results from 400 people living with HIV in the US. J Virus Erad, 3(1), 40-50.e21.
Dubé, Karine, David Evans, Laurie Sylla, Jeff Taylor, Bryan J. Weiner, Asheley Skinner, Harsha Thirumurthy, Joseph D. Tucker, Stuart Rennie, and Sandra B. Greene. “Willingness to participate and take risks in HIV cure research: survey results from 400 people living with HIV in the US.J Virus Erad 3, no. 1 (January 1, 2017): 40-50.e21.
Dubé K, Evans D, Sylla L, Taylor J, Weiner BJ, Skinner A, et al. Willingness to participate and take risks in HIV cure research: survey results from 400 people living with HIV in the US. J Virus Erad. 2017 Jan 1;3(1):40-50.e21.
Dubé, Karine, et al. “Willingness to participate and take risks in HIV cure research: survey results from 400 people living with HIV in the US.J Virus Erad, vol. 3, no. 1, Jan. 2017, pp. 40-50.e21.
Dubé K, Evans D, Sylla L, Taylor J, Weiner BJ, Skinner A, Thirumurthy H, Tucker JD, Rennie S, Greene SB. Willingness to participate and take risks in HIV cure research: survey results from 400 people living with HIV in the US. J Virus Erad. 2017 Jan 1;3(1):40-50.e21.

Published In

J Virus Erad

ISSN

2055-6640

Publication Date

January 1, 2017

Volume

3

Issue

1

Start / End Page

40 / 50.e21

Location

England