LGBT adolescents are underrepresented or excluded in scientific research studies that have the potential to decrease health disparities for this group. There are a few possible reasons for this. LGBT adolescents may be hesitant to participate in studies that require guardian/parent permission, especially those about HIV, sexual behavior, or LGBT-related issues, which could inadvertently out them or put them at risk for other negative consequences. In addition, institutional review boards (IRBs) – committees who approve, monitor, and review studies with human participants – may be reluctant to allow researchers to waive parental permission without data on why waivers are needed. Finally, researchers often exclude LGBT youth from research on sensitive topics because they expect or have had difficulties obtaining IRB approval for their studies. Unfortunately, these barriers prevent sexual minority youth from taking part in studies related to HIV, sexual health, drug use, and LGBT-related issues.
The goal of Adolescent Scientific Access Project (ASAP) is to generate empirical data and tools to help investigators and IRBs make better decisions about including LGBT adolescents in research, which can ultimately decrease barriers to LGBT youth’s participation in much-needed research on their health.
ASAP aims to:
- Use focus groups and surveys to ask LGBT youth about their perceptions of the risks and anticipated benefits of different aspects of HIV prevention and sexual health research
- Use focus groups and surveys to ask LGBT youth about their perceptions on whether guardian permission is a practical or a reasonable requirement for their participation in HIV prevention and sexual health research
- Design concrete tools to assess LGBT youth’s attitudes about research participation and the degree to which they are prepared to provide informed consent compared to LGBT teenagers 18 and older
This project is a joint collaboration between Northwestern University and Fordham University’s Department of Psychology and Center for Ethics Education. Enrollment and data collection for the first phase of the study is projected to start in 2015.
Principal Investigators: Brian Mustanski, PhD; Celia Fisher, PhD
Project Director: Kathryn Macapagal, PhD
Funder: National Institute on Minority Health and Health Disparities