The Bioethics of Adolescent Involvement in HIV Research. a Supplement to the Structural and Social Transitions Among Adolescents and Young Adults in Rakai (SSTAR) Project
Name: Emily Hoppes
School: Mailman School of Public Health, Class of 2020
Mentors: Esther Spindler, MS, John Santelli, MD, MPH, Neema Nakyanjo, MA, William Ddaaki, MSc
Abstract
This research aims to understand adolescent and parental attitudes and perspectives around adolescent involvement in research and how this might have an impact on their under-representativeness in research, especially in LMICs like Uganda. Research with adolescents is ethically complicated. Due to increasing independence and cognitive capacity during adolescence, researchers acknowledge the need for their participation in decision-making, but differ in their approaches to parent/guardian involvement; struggling to balance respect for autonomy with protection. The complexity of adolescent involvement has led to this population being underrepresented in health research globally. This study will eventually analyze results from 24 adult-adolescent dyad interviews. In order to make this analysis more focused and effective, several formative research activities were completed: 1) a scoping review of literature related to adolescent involvement in research, and 2) development of a draft codebook informed by eight pilot interviews. The scoping review revealed consensus on involving adolescents in research decision-making. Authors brought forward recommendations for more ethical and effective joint consent/assent processes, while others argued for parental consent waivers. Through the codebook development process, eight themes emerged, including themes related to the complexity of parent-adolescent decision-making as well as research risks, research benefits, and the purpose of research in communities. Research involving adolescents should use a rights-based framework that meaningfully involves youth in every step of the research process. Further studies are needed to examine the effectiveness of joint consent processes, ones that represent the complexity of parent-adolescent decision-making observed in the field.