Developing an ethical framework for the recruitment of people who inject drugs experiencing incarceration in HIV prevention research: a qualitative study

• Published in: Harm reduction journal 2024-12, Vol.21 (1), p.223-12, Article 223
• Main Authors: Murphy, Matthew, Gomes, Nyx, Kane, Kimberly, Rich, Josiah D, Goldsamt, Lloyd, Ahluwalia, Jasjit S, Guthrie, Kate M, Ramsey, Susan E, Vargas, Sara
• Format: Article
• Language: English
• Subjects: Adult; Care and treatment; Decision-making; Drug addicts; Drugs; Ethical aspects; Evidence-based medicine; Health Knowledge, Attitudes, Practice; HIV; HIV (Viruses); HIV infection; HIV Infections - prevention & control; Humans; Incarceration; Male; Middle Aged; Patient Selection - ethics; Pre-Exposure Prophylaxis - ethics; PrEP; Prevention; Prisoners; Prisoners - psychology; Qualitative Research; Recruiting; Research ethics; Sexually transmitted diseases; Social Stigma; Substance abuse; Substance Abuse, Intravenous; Substance use
• ISSN: 1477-7517; 1477-7517
• 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.