title: 'Well, It's the Risk of the Unknown… Right?': A Qualitative Study of Perceived Risks and Benefits of HIV Cure Research in the United States.
abstract: BACKGROUND
  Biomedical research towards an HIV cure is advancing in the United States and elsewhere, yet little is known about perceptions of risks and benefits among potential study participants and other stakeholders. We conducted a qualitative study to explore perceived risks and benefits of investigational HIV cure research among people living with HIV (PLWHIV), biomedical HIV cure researchers, policy-makers and bioethicists.
  
  
  METHODS
  We conducted a qualitative research study using in-depth interviews with a purposive sample of PLWHIV, biomedical HIV cure researchers, policy-makers and bioethicists in 2015-2016. We analysed interview transcripts using thematic analysis anchored in grounded theory.
  
  
  RESULTS
  We conducted and analyzed 36 key informant interviews. Qualitative analysis revealed four main findings. 1) Potential HIV cure study volunteers noted needing more information and education about the potential risks of HIV cure research. 2) Biomedical HIV cure researchers, policy-makers and bioethicists showed less awareness of social and financial risks of HIV cure research than PLWHIV. 3) Most respondents across the different categories of informants identified some risks that were too great to be acceptable in HIV cure research, although a subset of PLWHIV did not place an upper limit on acceptable risk. 4) PLWHIV showed a better awareness of potential psychological benefits of participating in HIV cure research than other groups of stakeholders.
  
  
  CONCLUSIONS
  Our research suggests that PLWHIV have a variable understanding of the individual risks, sometimes substantial, associated with participating in biomedical HIV cure research studies. Community engagement and increased research literacy may help improve community understanding. Intensive informed consent procedures will be necessary for ethical study implementation. The current state of HIV cure research offers greater potential benefits to society than to participants. There is likely to be disagreement among regulators, researchers, clinicians, and potential participants about what constitutes acceptable risk for HIV cure studies.
authors.affiliation: University of North Carolina Gillings School of Global Public Health, Chapel Hill, NC, United States of America.
authors.forename: Karine
authors.initials: K
authors.lastname: Dubé
authors.affiliation: Collaboratory of AIDS Researchers for Eradication (CARE) Community Advisory Board (CAB), Palm Springs, CA, United States of America.
authors.forename: Jeff
authors.initials: J
authors.lastname: Taylor
authors.affiliation: defeatHIV CAB, Seattle, WA, United States of America.
authors.forename: Laurie
authors.initials: L
authors.lastname: Sylla
authors.affiliation: Delaney AIDS Research Enterprise (DARE) CAB, Los Angeles, CA, United States of America.|Project Inform, Los Angeles, CA, United States of America.
authors.forename: David
authors.initials: D
authors.lastname: Evans
authors.affiliation: AIDS Action Baltimore, Baltimore, MD, United States of America.
authors.forename: Lynda
authors.initials: L
authors.lastname: Dee
authors.affiliation: Multi-Decadal, Multi-CAB Member, Glendale, CA, United States of America.
authors.forename: Alasdair
authors.initials: A
authors.lastname: Burton
authors.affiliation: Zephyr Long-Term Non-Progressors (LTNP) Foundation, Inc., Sacramento, CA, United States of America.
authors.forename: Loreen
authors.initials: L
authors.lastname: Willenberg
authors.affiliation: Department of Social Medicine, UNC Bioethics Center, Chapel Hill, NC, United States of America.
authors.forename: Stuart
authors.initials: S
authors.lastname: Rennie
authors.affiliation: University of North Carolina Gillings School of Global Public Health, Chapel Hill, NC, United States of America.|Duke Clinical Research Institute (DCRI), Durham, NC, United States of America.
authors.forename: Asheley
authors.initials: A
authors.lastname: Skinner
authors.affiliation: UNC Institute of Global Health and Infectious Diseases (IGHID), Chapel Hill, NC, United States of America.|UNC Project China, Guangzhou, China.
authors.forename: Joseph D
authors.initials: JD
authors.lastname: Tucker
authors.affiliation: University of North Carolina Gillings School of Global Public Health, Chapel Hill, NC, United States of America.|Department of Global Health, University of Washington, Seattle, WA, United States of America.
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, United States of America.
authors.forename: Sandra B
authors.initials: SB
authors.lastname: Greene
mesh_terms: D000288:Administrative Personnel / Q000523:psychology*; D000328:Adult; D019380:Anti-HIV Agents; D001294:Attitude to Health; D002986:Clinical Trials as Topic / Q000523:psychology; D004358:Drug Therapy / Q000523:psychology; D026822:Ethicists / Q000523:psychology*; D005260:Female; D015316:Genetic Therapy / Q000523:psychology; D015658:HIV Infections / Q000188:drug therapy / Q000523:psychology* / Q000628:therapy; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010361:Patients / Q000523:psychology*; D036301:Qualitative Research; D012106:Research; D012108:Research Personnel / Q000523:psychology*; D018570:Risk Assessment; D033581:Stem Cell Transplantation / Q000523:psychology; D014481:United States; D055815:Young Adult
chemical_list: D019380:Anti-HIV Agents