title: Participation in HIV cure-related research: a scoping review of the proxy literature and implications for future research.
abstract: OBJECTIVE
  To identify the main types of HIV cure-related strategies and examine possible risks (and benefits) associated with participating in HIV cure-related research studies.
  
  
  METHODS
  We undertook a scoping review to first map out the landscape of HIV cure-related research and then examined the risks and potential benefits associated with participating in HIV cure research. Given the early stage of many HIV cure-related studies, we used proxy literatures from non-cure HIV research and cancer research in order to anticipate possible motivators and deterrents of participation in HIV cure-related studies.
  
  
  RESULTS
  We discussed four main categories of HIV cure-related research: (1) early antiretroviral treatment (ART); (2) latency-reversing agents (LRAs); (3) therapeutic vaccinations and immune-based therapies (IBT); and (4) stem-cell transplantation and gene therapy. At this juncture, these categories of HIV cure-related research have substantial individual risks and negligible individual and clinical benefits. Non-cure HIV research (including HIV prevention and treatment) and cancer research have empirical similarities (and differences) to HIV cure research and may provide an opportunity to anticipate ethical and logistical challenges associated with HIV cure-related research participation and decision-making. Learning from the cancer field, a strong foundation of patient-participant and clinician-researcher trust will need to be established to facilitate recruitment of participants into HIV cure-related studies.
  
  
  CONCLUSIONS
  Further empirical social science and ethics research will be necessary to inform clinical HIV cure-related research. The study of participation in HIV cure-related research can gain insights from proxy fields by incorporating study elements to clearly explain motivators and deterrents to participation and to inform the implementation of HIV cure-related studies. Study-specific contexts from the reviewed literature further demonstrate the importance of various types of research to assess factors affecting participation in HIV cure-related research, including adequate formative and ethics research.
authors: Institute for Global Health and Infectious Diseases (IGHID), University of North Carolina at Chapel Hill (UNC-CH), Chapel Hill, NC, USA; Health Policy and Management, University of North Carolina at Chapel Hill (UNC-CH), Chapel Hill, NC, USA.
authors: Karine
authors: K
authors: Dubé
authors: Institute for Global Health and Infectious Diseases (IGHID), University of North Carolina at Chapel Hill (UNC-CH), Chapel Hill, NC, USA.
authors: Catalina
authors: C
authors: Ramirez
authors: AVAC, New York City, NY, USA.
authors: Jessica
authors: J
authors: Handibode
authors: CARE Community Advisory Board (CAB), Palm Springs, CA, USA.
authors: Jeffrey
authors: J
authors: Taylor
authors: Health Policy and Management, University of North Carolina at Chapel Hill (UNC-CH), Chapel Hill, NC, USA.
authors: Asheley
authors: A
authors: Skinner
authors: Health Policy and Management, University of North Carolina at Chapel Hill (UNC-CH), Chapel Hill, NC, USA.
authors: Sandra
authors: S
authors: Greene
authors: Institute for Global Health and Infectious Diseases (IGHID), University of North Carolina at Chapel Hill (UNC-CH), Chapel Hill, NC, USA; UNC Project-China, Guangzhou, China.
authors: Joseph D
authors: JD
authors: Tucker
keywords: HIV cure-related research; social sciences; willingness to participate