The Adolescent Scientific Access Project (ASAP!) explores the ethical issues associated with involving sexual and gender minority (SGM) minor adolescents in HIV prevention and sexual health research. SGM adolescents are underrepresented in or excluded from scientific research studies that have the potential to reduce health disparities among their population.
There are a few possible reasons for this:
- SGM adolescents may be hesitant to participate in studies where guardian permission is required.
- Institutional review boards (IRBs) who approve, monitor, and review studies with human participants may be reluctant to waive requirements for parental permission without evidence on why waivers are needed.
- Researchers may exclude SGM youth from research because they expect or have experienced difficulties in obtaining IRB approval for their studies.
These barriers prevent SGM youth from taking part in studies related to HIV, sexual health, drug use, and SGM-related issues.
The goal of ASAP is to generate empirical data and tools to help investigators and IRBs make better decisions about including SGM adolescents in research, which can ultimately decrease barriers to SGM youth’s participation in much-needed research on their health.
ASAP aims to:
- Use focus groups and surveys to ask SGM adolescents about their experiences with and attitudes toward requiring guardian permission for HIV prevention and sexual health research
- Use focus groups and surveys to ask SGM adolescents about the risks and anticipated benefits of different aspects of research, ranging from advertising and recruitment, to study procedures and post-study access to sexual health resources
- Use focus groups, interviews, and surveys to examine parents’ perspectives on SGM and non-SGM adolescents’ participation in HIV prevention research
- Use these data to design concrete tools to assess SGM adolescents’ attitudes about research participation and their preparedness to provide informed consent if parental permission is waived
This project is a collaboration between Northwestern University and Fordham University’s Department of Psychology and Center for Ethics Education. Enrollment and data collection is ongoing, and study activities will continue through May 2018.