Ethical and Regulatory Issues with Conducting Sexuality Research with LGBT Adolescents: A Call to Action for a Scientifically Informed Approach
- 2.9k Downloads
Lesbian, gay, bisexual, and transgender (LGBT) adolescents experience disparities in mental and sexual health. There is also a lack of research on this population relative to other adolescents, which limits our ability to effectively address these health disparities. Researchers may unfortunately avoid conducting research with this population because of anticipated or actual experiences with difficulties in obtaining IRB approval. A case example is provided to illustrate the ethical and regulatory issues related to research with LGBT adolescents. Relevant U.S. federal and local regulations related to research on sexual and mental health with adolescents is then reviewed. Data are presented demonstrating that requiring parental consent for LGBT youth under age 18 would likely alter study result. Data are also presented on participants’ appraisals of the risks and discomforts associated with research participation. The provision of such empirical data on the risks of research participation is consistent with the goal of moving the IRB process of risk/benefit assessment from being entirely subjective to being evidence-based. Finally, recommendations are provided on how to approach these issues in IRB applications and investigators are called to help to build a corpus of scholarship that can advance empirical knowledge in this area.
KeywordsGay youth Homosexuals Lesbians Bisexuals Ethics Institutional review boards
Project Q2 was IRB approved by all engaged institutions. Use of quotations from correspondence with the IRB was officially determined not to be human subjects research by the University of Illinois at Chicago (UIC) IRB. Project Q2 was made possible by grants from the American Foundation for Suicide Prevention and the William T. Grant Foundation. I would like to acknowledge the contributions of Dr. Robert Garofalo and Ms. Erin Emerson, who served as Co-Investigators on Project Q2 and to the research team at UIC and Howard Brown Health Center. Thank you to Dr. Sarah Johnson, Dr. Robert Garofalo, Dr. Ritch Savin-Williams, and Ms. Erin Emerson who provided comments on drafts of the article.
- Behrman, R. E., Kliegman, R., & Jenson, H. B. (2004). Nelson textbook of pediatrics (17th ed.). Philadelphia, PA: Saunders.Google Scholar
- CDC. (2009). Surveillance summaries: Sexual and reproductive health of persons aged 10–24 years—United States, 2002–2007. Morbidity and Mortality Weekly Report, 58.Google Scholar
- Croyle, R., & Loftus, E. (1993). Recollection in the kingdom of AIDS. In D. G. Ostrow & R. C. Kessler (Eds.), Methodological issues in AIDS behavioral research (pp. 163–180). New York: Plenum Press.Google Scholar
- Fendrich, M. (2009, August). Empirical research on risks from studies of sexuality and other sensitive topics: What we don’t know may be hurting us. Paper presented at the meeting of the International Academy of Sex Research, San Juan, Puerto Rico.Google Scholar
- Field, M. J., Behrman, R. E., & Institute of Medicine (U.S.). Committee on Clinical Research Involving Children. (2004). Ethical conduct of clinical research involving children. Washington, DC: National Academies Press.Google Scholar
- Guttmacher Institute. (2010). State policies in brief: An overview of minors consent law. New York: Guttmacher Institute.Google Scholar
- Mullen, P. D., Ramirez, G., Strouse, D., Hedges, L. V., & Sogolow, E. (2002). Meta-analysis of the effects of behavioral HIV prevention interventions on the sexual risk behavior of sexually experienced adolescents in controlled studies in the United States. Journal of Acquired Immune Deficiency Syndrome, 30, S94–S105.Google Scholar
- Office for Human Research Protections (OHRP). (2010). IRB guidebook. Retrieved February 15, 2010, from http://hhs.gov/ohrp/irb/irb_guidebook.htm.
- Savin-Williams, R. C. (1994). Verbal and physical abuse as stressors in the lives of lesbian, gay male, and bisexual youths: Associations with school problems, running away, substance abuse, prostitution, and suicide. Journal of Consulting and Clinical Psychology, 62, 261–269.PubMedCrossRefGoogle Scholar
- Semaan, S., Kay, L., Strouse, D., Sogolow, E., Mullen, P. D., Neumann, M. S., et al. (2002). A profile of U.S.-based trials of behavioral and social interventions for HIV risk reduction. Journal of Acquired Immune Deficiency Syndrome, 30, S30–S50.Google Scholar
- Shaffer, D., Fisher, P., & Lucas, C. (2004). The diagnostic interview schedule for children (DISC). In M. Hersen (Ed.), Comprehensive handbook of psychological assessment, Volume 2: Personality assessment (pp. 256–270). Hoboken, NJ: Wiley.Google Scholar
- The University of California at San Diego Task Force on Decisional Capacity. (2003). Procedures for determination of decisional capacity in persons participating in research protocols. San Diego: University of California.Google Scholar
- UCSD Task Force on Decisional Capacity. (2003). Procedures for determination of decisional capacity in persons participating in research protocols. http://irb.ucsd.edu/decisional.shtml. Accessed 1 Aug 2006.
- Weithorn, L. A. (1983). Children’s capacity to decide to decide about participation in research. IRB: A Review of Human Subjects Research, 5, 1–5.Google Scholar