Adolescent research inclusion, informed consent, autonomy, and protection: An exploration of key stakeholder knowledge, attitudes, and perspectives in Uganda
Name: Fiona McAuley
School: Vagelos College of Physicians and Surgeons, Class of 2024
Mentors: John Santelli, MD, MPH and Tom Lutalo, MS, PhD (Rakai Health Sciences Program)
Abstract
Adolescents have been underrepresented in health research due to ethical frameworks that have emphasized their vulnerability and need for protection. Research stakeholders face challenges in balancing the competing ethical priorities to respect autonomy while providing adequate protection across the diverse range of adolescent age and experience. We conducted 19 in-depth interviews with researchers, community leaders, and ethics committee members in Uganda to better understand their perspectives regarding adolescent research participation, decision-making capacity, and the optimal balance between autonomy and protection. Interviews were transcribed, coded, and qualitatively analyzed in Dedoose using deductive and inductive approaches to situate local perspectives within the broader international adolescent health literature. There was consensus about the importance of including all adolescent age groups in research; younger age groups were noted to require additional safeguards. Participants reported challenges navigating confidentiality and parental permission requirements, which some saw as barriers to participation. All participants acknowledged the importance of participatory decision-making in informed consent through assent or consent, with age, challenging life experiences, and risks associated with a decision noted to be important determinants of decision-making capacity. Stakeholders often felt they lacked expertise and authoritative guidance to accurately assess capacity. Diverse research stakeholders shared remarkably consistent views regarding the need to expand adolescent research inclusion and develop guidelines for informed consent that acknowledge the range of adolescent evolving capacity. Such evidence-based guidelines would support Ugandan research leaders to achieve their common goals of promoting adolescent inclusion, supporting developing decision-making, and maintaining adequate protection in research.