'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
| Autor: | Stuart Rennie, Alasdair Burton, Joseph D. Tucker, Loreen Willenberg, Sandra B. Greene, Laurie Sylla, David Evans, Bryan J. Weiner, Lynda Dee, Jeff Taylor, Karine Dubé, Asheley Cockrell Skinner |
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| Jazyk: | angličtina |
| Rok vydání: | 2017 |
| Předmět: |
RNA viruses
Male 0301 basic medicine Cell Transplantation Cancer Treatment Social Sciences lcsh:Medicine HIV Infections Pathology and Laboratory Medicine Grounded theory 0302 clinical medicine Immunodeficiency Viruses Sociology Ethicists Informed consent Medicine and Health Sciences Blood and Lymphatic System Procedures 030212 general & internal medicine lcsh:Science Qualitative Research Clinical Trials as Topic Social Research Multidisciplinary Community engagement Stem Cell Therapy Middle Aged Research Personnel 3. Good health Social research Oncology Medical Microbiology Viral Pathogens Viruses Female Pathogens Thematic analysis Risk assessment Attitude to Health Research Article Adult medicine.medical_specialty Drug Research and Development Patients Anti-HIV Agents Surgical and Invasive Medical Procedures Microbiology Risk Assessment Interviews as Topic Young Adult 03 medical and health sciences Adverse Reactions Drug Therapy Environmental health Retroviruses medicine Humans Microbial Pathogens Pharmacology Clinical Genetics Transplantation business.industry Research Lentivirus lcsh:R Organisms Administrative Personnel Biology and Life Sciences HIV Genetic Therapy United States Cure Study 030104 developmental biology Family medicine lcsh:Q business Stem Cell Transplantation Qualitative research |
| Zdroj: | PLoS ONE, Vol 12, Iss 1, p e0170112 (2017) PLoS ONE |
| ISSN: | 1932-6203 |
| Popis: | Introduction 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. Conclusion 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. |
| Databáze: | OpenAIRE |
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