title: Willingness to participate and take risks in HIV cure research: survey results from 400 people living with HIV in the US.
abstract: BACKGROUND
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: University of North Carolina Gillings School of Global Public Health , Chapel Hill , NC , USA.
authors.forename: Karine
authors.initials: K
authors.lastname: Dubé
authors.affiliation: Delaney AIDS Research Enterprise (DARE) Community Advisory Board (CAB), Los Angeles, CA, USA; Project Inform, Los Angeles, CA, USA.
authors.forename: David
authors.initials: D
authors.lastname: Evans
authors.affiliation: defeatHIV CAB , Seattle , USA.
authors.forename: Laurie
authors.initials: L
authors.lastname: Sylla
authors.affiliation: Collaboratory of AIDS Researchers for Eradication (CARE) CAB , Palm Springs , USA.
authors.forename: Jeff
authors.initials: J
authors.lastname: Taylor
authors.affiliation: University of North Carolina Gillings School of Global Public Health, Chapel Hill, NC, USA; Department of Global Health, University of Washington, Seattle, WA, USA.
authors.forename: Bryan J
authors.initials: BJ
authors.lastname: Weiner
authors.affiliation: University of North Carolina Gillings School of Global Public Health, Chapel Hill, NC, USA; Duke Clinical Research Institute (DCRI), Durham, NC, USA.
authors.forename: Asheley
authors.initials: A
authors.lastname: Skinner
authors.affiliation: University of North Carolina Gillings School of Global Public Health , Chapel Hill , NC , USA.
authors.forename: Harsha
authors.initials: H
authors.lastname: Thirumurthy
authors.affiliation: UNC Project China, Guangzhou, China; UNC Institute of Global Health and Infectious Diseases (IGHID), Chapel Hill, NC, USA.
authors.forename: Joseph D
authors.initials: JD
authors.lastname: Tucker
authors.affiliation: Department of Social Medicine , UNC Bioethics Center , Chapel Hill , NC , USA.
authors.forename: Stuart
authors.initials: S
authors.lastname: Rennie
authors.affiliation: University of North Carolina Gillings School of Global Public Health , Chapel Hill , NC , USA.
authors.forename: Sandra B
authors.initials: SB
authors.lastname: Greene
keywords: HIV cure research; perceived benefits; perceived risks; willingness to participate