Evidence-based Recommendations for Ethical Research Practices with SGM Adolescents
Brian Mustanski, Kathryn Macapagal, Margaret Matson, and Rana Saber
A significant barrier to sexual and gender minority (SGM) adolescents’ participation in sexual health research has been institutional review boards’ (IRBs) failure to apply federal regulations permitting adolescents to self-consent to research without parental involvement (Mustanski & Fisher, 2016).
Studies have shown that IRBs often overestimate risk on sensitive topics and behavioral research and express concerns that participants may experience psychological distress in sexual behavior surveys or engage in unsafe sexual activity (Petrie et al., 2013; Pritchard, 2011). In addition, attitudes have generally been conservative, assuming adolescents are incapable of making mature and well-considered decisions about research participation and in need of protection by their parents/guardians and other responsible adults (Chenneville et al., 2010).
While well-intentioned, these assumptions delay or discourage necessary research and function to systematically exclude an entire population of adolescents who may benefit from participation in research without considering that many have the capacity to provide informed consent and make decisions that impact their sexual health and wellbeing (Mustanski & Fisher, 2016).
To better inform IRB decision-making, we collected data from SGM adolescents and parents on their perspectives toward participating in sexual health research and parental permission requirements. We frequently receive questions from other investigators about conducting sexual health research with SGM adolescents and navigating conversations with IRBs about this type of research. The purpose of this white paper is to summarize our studies’ findings and share a guide for researchers based on lessons learned.