Ethical Aspects of Involving Adolescents in HIV Research: A Systematic Review of the Empiric Literature

The purpose of this study was to evaluate existing research on the ethics of including adolescents in HIV research.

The study reported on adolescents aged 10 to 19 years with and without HIV, parents of HIV-positive adolescents, and community stakeholders.

The study used Embase, Ovid Medline, and CINAHL databases to conduct a literature review of articles published from January 1, 1985 to April 30, 2022. The literature review included articles involving the ethics of including adolescents in HIV research. This review excluded case studies, commentaries, organization policy statements, reviews, and conference abstracts. It also excluded studies focusing on sexual health but not specifically HIV. All articles met minimum quality standards.

The systematic review included 41 studies: 22 from high-income countries (HIC), 18 from low- or middle-income countries (LMIC), and 1 with participants in both HIC and LMIC. Of the articles, 24 were qualitative, 11 quantitative, and 6 were mixed-method articles. Overall, adolescents were reported to have a good understanding of informed consent, which was similar to adult level. Some articles included techniques to improve understanding, such as brochures, interspersed questions, and discussion while consenting. In the LMIC group, there were mixed opinions concerning parental consent and confidentiality. In HIC studies, some youth were unwilling to participate in research if parental consent was required or if there were concerns about confidentiality. This was most commonly seen in sexual and gender minority youth.

The research supported inclusion of adolescents in HIV research as they understood informed consent similarly to adults; however, it emphasized there are processes that can be used to enhance and facilitate understanding of more abstract concepts. There are nuances to balancing the dynamics between adolescents and their parents in terms of consent and autonomy while protecting appropriate access.

This study highlights that adolescents could be a valuable group to include in HIV research. Without their inclusion, there can be delays in the research to improve standard of care. However, this study outlines that parental consent can affect participation, especially in specific study groups. This study emphasizes it is imperative to strategize ways to improve involvement as well as ensure the safety of all patients. There are several million youth living with HIV globally and including this population in HIV research would likely accelerate treatment implementation for a vulnerable population. We must work to safely include all populations in research to guarantee the generalizability of these studies.