Murphy Matthew, Gomes Nyx, Kane Kimberly, Rich Josiah D, Goldsamt Lloyd, Ahluwalia Jasjit S, Guthrie Kate M, Ramsey Susan E, Vargas Sara
Lifespan, Providence, RI, USA.
Alpert Medical School of Brown University, Providence, RI, USA.
Harm Reduct J. 2024 Dec 20;21(1):223. doi: 10.1186/s12954-024-01138-z.
HIV disproportionately impacts people who experience incarceration. Incarceration represents an opportunity to engage in HIV prevention care for individuals who often experience a number of barriers accessing health services in the community. The development of evidence-based practices promoting pre-exposure prophylaxis for HIV prevention (PrEP) is crucial for ending the HIV epidemic within this highly marginalized population. However, PrEP research within carceral facilities has been limited and is hampered in part by the lack of ethical guidance on conducting HIV prevention research in this unique setting where incarcerated individuals are categorized as a vulnerable population requiring specific protections. This lack of knowledge is particularly striking when considering the lack of input from incarcerated individuals themselves on the responsible conduct of research, which is critical to understanding ways to ensure participant autonomy while avoiding coercive practices in research activities.
In order to gain a better understanding of ethical approaches to the conduct of HIV prevention research among incarcerated individuals, we conducted qualitative interviews with 21 incarcerated men who reported injecting drugs and met clinical criteria for PrEP use. The interview topics included HIV knowledge, PrEP knowledge, stigma, and perceptions related to ethical research practices.
Themes identified included how forced abstinence during incarceration can negatively affect research participation, the importance of participant comfort as it relates to ensuring autonomy in decision making, a desire for person centred approaches in research activities, study staff characteristics impacting participant experience, and perceptions of carceral staff as members of research teams.
The results of this study indicate that conducting research focused on improving PrEP use in a carceral environment has support among those experiencing incarceration. However, researchers should place the participant experience at the center of research protocol development.
艾滋病毒对经历监禁的人群影响尤为严重。监禁为那些在社区中获得医疗服务常常面临诸多障碍的个人提供了参与艾滋病毒预防护理的契机。制定基于证据的促进艾滋病毒暴露前预防(PrEP)的实践方法对于在这一高度边缘化人群中终结艾滋病毒流行至关重要。然而,监狱设施内的PrEP研究一直有限,部分原因是在这种独特环境中开展艾滋病毒预防研究缺乏伦理指导,在这种环境中,被监禁者被归类为需要特殊保护的弱势群体。考虑到被监禁者自身对负责任的研究行为缺乏投入,而这对于理解如何确保参与者自主性同时避免研究活动中的强制行为至关重要时,这种知识的匮乏就尤为突出。
为了更好地理解在被监禁者中开展艾滋病毒预防研究的伦理方法,我们对21名报告有注射毒品行为且符合PrEP使用临床标准的被监禁男性进行了定性访谈。访谈主题包括艾滋病毒知识、PrEP知识、耻辱感以及与伦理研究实践相关的看法。
确定的主题包括监禁期间的强制禁欲如何对研究参与产生负面影响、参与者舒适度对于确保决策自主性的重要性、研究活动中以人为本方法的必要性、影响参与者体验的研究人员特征,以及将监狱工作人员视为研究团队成员的看法。
本研究结果表明,在监禁环境中开展旨在提高PrEP使用的研究在被监禁者中得到支持。然而,研究人员应将参与者体验置于研究方案制定的中心位置。