Archives of Sexual Behavior

, Volume 47, Issue 7, pp 1923–1935 | Cite as

Parents’ Perspectives About Adolescent Boys’ Involvement in Biomedical HIV Prevention Research

  • Brian MustanskiEmail author
  • Kathryn Macapagal
  • Matthew Thomann
  • Brian A. Feinstein
  • Michael E. Newcomb
  • Darnell Motley
  • Celia B. Fisher
Original Paper


Research on the use of pre-exposure prophylaxis (PrEP) among adolescents at high risk for HIV is urgently needed, and parents’ perspectives on these studies are essential for guiding the responsible conduct of adolescent PrEP research. We conducted interviews with 30 parents of adolescent boys (50% known/presumed heterosexual; 50% sexual minority) to understand their views of research risks and benefits and parental permission regarding their son’s involvement in a hypothetical PrEP adherence trial. Parents identified several health and educational benefits of the study and expressed that waiving parental permission would overcome barriers to accessing PrEP, particularly for youth who may benefit most. Among their concerns were medication non-adherence and risk compensation. Parents provided suggestions to facilitate informed, rational, and voluntary participation decisions and protect youth’s safety if parental permission was waived. These findings can inform ways to increase parental trust in PrEP research and create adequate protections for adolescent participants.


HIV prevention Pre-exposure prophylaxis Parents Adolescents Men who have sex with men 



This study was supported by R01MD009561 from the National Institute on Minority Health and Health Disparities (PIs: Mustanski and Fisher). Brian A. Feinstein's time was supported by a grant from the National Institute on Drug Abuse (1F32DA042708). We acknowledge the NIH supported Third Coast Center for AIDS Research for creating a supportive environment for HIV/AIDS research (P30AI117943). The content in this manuscript is solely the responsibility of the authors and does not reflect the views of the National Institutes of Health. We are grateful to Kai Korpak, Maggie Matson, and Arielle Zimmerman for their assistance with participant recruitment, interview transcription, and coding. We also would like to thank our participants, who generously gave us their time and from whom we learned so much.


  1. Centers for Disease Control and Prevention [CDC]. (2016). Diagnoses of HIV infection among adolescents and young adults in the United States and 6 dependent areas 2010–2014. HIV surveillance supplemental report. Retrieved from
  2. Chavez, N. R., Williams, C. Y., Ipp, L. S., Catallozzi, M., Rosenthal, S. L., & Breitkopf, C. R. (2016). Altruistic reasoning in adolescent–parent dyads considering participation in a hypothetical sexual health clinical trial for adolescents. Research Ethics, 12, 68–79. doi: 10.1177/1747016115587963.CrossRefPubMedGoogle Scholar
  3. Dedoose. (2015). Web application for managing, analyzing, and presenting qualitative and mixed method data. Los Angeles, CA: SocioCultural Research Consultants, LLC. Retrieved from
  4. Department of Health and Human Services. (2009). Code of Federal Regulations, Title 45 Public Welfare, Part 46 Protection of Human Subjects. Retrieved from
  5. Fisher, C. B., Arbeit, M. R., Dumont, M. S., Macapagal, K., & Mustanski, B. (2016). Self-consent for HIV prevention research involving sexual and gender minority youth: Reducing barriers through evidence-based ethics. Journal of Empirical Research on Human Research Ethics, 11, 3–14. doi: 10.1177/1556264616633963.CrossRefPubMedPubMedCentralGoogle Scholar
  6. Flicker, S., & Guta, A. (2008). Ethical approaches to adolescent participation in sexual health research. Journal of Adolescent Health, 42, 3–10. doi: 10.1016/j.jadohealth.2007.07.017.CrossRefPubMedGoogle Scholar
  7. Garofalo, R., Hotton, A. L., Kuhns, L. M., Gratzer, B., & Mustanski, B. (2016). Incidence of HIV infection and sexually transmitted infections and related risk factors among very young men who have sex with men. Journal of Acquired Immune Deficiency Syndromes, 72, 79–86. doi: 10.1097/QAI.0000000000000933.CrossRefPubMedGoogle Scholar
  8. Garofalo, R., Mustanski, B., & Donenberg, G. (2008). Parents know and parents matter; is it time to develop family-based HIV prevention programs for young men who have sex with men? Journal of Adolescent Health, 43, 201–204. doi: 10.1016/j.jadohealth.2008.01.017.CrossRefPubMedGoogle Scholar
  9. Gilbert, A. L., Knopf, A. S., Fortenberry, J. D., Hosek, S. G., Kapogiannis, B. G., & Zimet, G. D. (2015). Adolescent self-consent for biomedical human immunodeficiency virus prevention research. Journal of Adolescent Health, 57, 113–119. doi: 10.1016/j.jadohealth.2015.03.017.CrossRefPubMedGoogle Scholar
  10. Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago, IL: Aldine Publishing Company.Google Scholar
  11. Grant, R. M., Lama, J. R., Anderson, P. L., McMahan, V., Liu, A. Y., … iPrEx Study Team. (2010). Preexposure chemoprophylaxis for HIV prevention in men who have sex with men. New England Journal of Medicine, 363, 2587–2599. doi: 10.1056/NEJMoa1011205.CrossRefPubMedGoogle Scholar
  12. Harden, K. P. (2014). A sex-positive framework for research on adolescent sexuality. Perspectives on Psychological Science, 9, 455–469. doi: 10.1177/1745691614535934.CrossRefPubMedGoogle Scholar
  13. Hruschka, D. J., Schwartz, D., St.John, D. C., Picone-Decaro, E., Jenkins, R. A., & Carey, J. W. (2004). Reliability in coding open-ended data: Lessons learned from HIV behavioral research. Field Methods, 16, 307–331. doi: 10.1177/1525822x04266540.CrossRefGoogle Scholar
  14. Jago, R., & Bailey, R. (2001). Ethics and paediatric exercise science: Issues and making a submission to a local ethics and research committee. Journal of Sports Science, 19, 527–535. doi: 10.1080/026404101750238980.CrossRefGoogle Scholar
  15. King, H. L., Keller, S. B., Giancola, M. A., Rodriguez, D. A., Chau, J. J., Young, J. A., … Smith, D. M. (2014). Pre-exposure prophylaxis accessibility research and evaluation (PrEPARE Study). AIDS and Behavior, 18, 1722–1725. doi: 10.1007/s10461-014-0845-5.CrossRefPubMedPubMedCentralGoogle Scholar
  16. Knopf, A. S., Gilbert, A. L., Zimet, G. D., Kapogiannis, B. G., Hosek, S. G., Fortenberry, J. D., & Ott, M. A. (2016). Moral conflict and competing duties in the initiation of a biomedical HIV prevention trial with minor adolescents. AJOB Empirical Bioethics. doi: 10.1080/23294515.2016.1251506.PubMedPubMedCentralGoogle Scholar
  17. Macapagal, K., Coventry, R., Arbeit, M. R., Fisher, C. B., & Mustanski, B. (2017). “I won’t out myself just to do a survey”: Sexual and gender minority adolescents’ perspectives on the risks and benefits of sex research. Archives of Sexual Behavior, 46, 1393–1409. doi: 10.1007/s10508-016-0784-5.CrossRefPubMedGoogle Scholar
  18. Miller, K. S., Kotchick, B. A., Dorsey, S., Forehand, R., & Ham, A. Y. (1998). Family communication about sex: What are parents saying and are their adolescents listening? Family Planning Perspectives, 30, 218–222.CrossRefPubMedGoogle Scholar
  19. Miller, R. L., Forte, D., Wilson, B. D., & Greene, G. J. (2006). Protecting sexual minority youth from research risks: Conflicting perspectives. American Journal of Community Psychology, 37, 341–348. doi: 10.1007/s10464-006-9053-4.CrossRefPubMedGoogle Scholar
  20. Moilanen, K. L. (2015). Predictors of parental consent for adolescent participation in sexual health-related research. Journal of Empirical Research on Human Research Ethics, 10, 157–168. doi: 10.1177/1556264615575510.CrossRefPubMedGoogle Scholar
  21. Moilanen, K. L. (2016). Why do parents grant or deny consent for adolescent participation in sexuality research? Journal of Youth and Adolescence, 45, 1020–1036. doi: 10.1007/s10964-016-0445-y.CrossRefPubMedGoogle Scholar
  22. Mustanski, B. (2011). Ethical and regulatory issues with conducting sexuality research with LGBT adolescents: A call to action for a scientifically informed approach. Archives of Sexual Behavior, 40, 673–686. doi: 10.1007/s10508-011-9745-1.CrossRefPubMedGoogle Scholar
  23. Mustanski, B. (2015). Future directions in research on sexual minority adolescent mental, behavioral, and sexual health. Journal of Clinical Child and Adolescent Psychology, 44, 204–219. doi: 10.1080/15374416.2014.982756.CrossRefPubMedPubMedCentralGoogle Scholar
  24. Mustanski, B., Coventry, R., Macapagal, K., Arbeit, M. R., & Fisher, C. B. (2017). Sexual and gender minority adolescents’ views on HIV research participation and parental permission: A mixed-methods study. Perspectives on Sexual and Reproductive Health, 49, 111–121. doi: 10.1363/psrh.12027.CrossRefPubMedPubMedCentralGoogle Scholar
  25. Mustanski, B., & Fisher, C. B. (2016). HIV rates are increasing in gay/bisexual teens: IRB barriers to research must be resolved to bend the curve. American Journal of Preventive Medicine, 51, 249–252. doi: 10.1016/j.amepre.2016.02.026.CrossRefPubMedPubMedCentralGoogle Scholar
  26. Mustanski, B., Swann, G., Newcomb, M. E., & Prachand, N. (2017). Effects of parental monitoring and knowledge on substance use and HIV risk behaviors among young men who have sex with men: Results from three studies. AIDS and Behavior. doi: 10.1007/s10461-017-1761-2.Google Scholar
  27. Newcomb, M. E., Clifford, A., Greene, G. J., & Mustanski, B. (2016). Parent perspectives about sexual minority adolescent participation in research and requirements of parental permission. Journal of Adolescent Health, 59, 443–449. doi: 10.1016/j.jadohealth.2016.05.014.CrossRefPubMedGoogle Scholar
  28. Ott, M. A., Rosenberger, J. G., & Fortenberry, J. D. (2010). Parental permission and perceived research benefits in adolescent STI research. Journal of Empirical Research on Human Research Ethics, 5, 57–64. doi: 10.1525/jer.2010.5.2.57.CrossRefPubMedPubMedCentralGoogle Scholar
  29. Pace, J. E., Siberry, G. K., Hazra, R., & Kapogiannis, B. G. (2013). Preexposure prophylaxis for adolescents and young adults at risk for HIV infection: Is an ounce of prevention worth a pound of cure? Clinical Infectious Diseases, 56, 1149–1155. doi: 10.1093/cid/cis1020.CrossRefPubMedGoogle Scholar
  30. Pasternak, R. H., Geller, G., Parrish, C., & Cheng, T. L. (2006). Adolescent and parent perceptions on youth participation in risk behavior research. Archives of Pediatrics and Adolescent Medicine, 160, 1159–1166. doi: 10.1001/archpedi.160.11.1159.CrossRefPubMedGoogle Scholar
  31. Pratto, F., Sidanius, J., Stallworth, L. M., & Malle, B. F. (1994). Social dominance orientation: A personality variable predicting social and political attitudes. Journal of Personality and Social Psychology, 67, 741–763. doi: 10.1037//0022-3514.67.4.741.CrossRefGoogle Scholar
  32. Rosenthal, S. L., de Roche, A. M., Catallozzi, M., Breitkopf, C. R., Ipp, L. S., Chang, J., … Hu, M. C. (2016). Parents’ and adolescents’ attitudes about parental involvement in clinical research. Journal of Pediatric and Adolescent Gynecology, 29, 372–377. doi: 10.1016/j.jpag.2016.01.119.CrossRefPubMedPubMedCentralGoogle Scholar
  33. Santelli, J. S., Smith Rogers, A., Rosenfeld, W. D., DuRant, R. H., Dubler, N., Morreale, M., … Schissel, A. (2003). Guidelines for adolescent health research. A position paper of the Society for Adolescent Medicine. Journal of Adolescent Health, 33, 396–409.PubMedGoogle Scholar
  34. Thoma, B. C., & Huebner, D. M. (2014). Parental monitoring, parent–adolescent communication about sex, and sexual risk among young men who have sex with men. AIDS and Behavior, 18, 1604–1614. doi: 10.1007/s10461-014-0717-z.CrossRefPubMedPubMedCentralGoogle Scholar
  35. United Nations General Assembly. (1989). Convention on the rights of the child (A/RES/44/25). New York, NY. Retrieved from
  36. White House Office of National AIDS Policy. (2015). National HIV/AIDS strategy for the United States: Updated to 2020. Retrieved from

Copyright information

© Springer Science+Business Media, LLC 2017

Authors and Affiliations

  1. 1.Department of Medical Social Sciences, Institute for Sexual and Gender Minority Health and WellbeingNorthwestern UniversityChicagoUSA
  2. 2.Department of Anthropology and SociologyKalamazoo CollegeKalamazooUSA
  3. 3.Psychology ServiceEdward Hines, Jr. VA Medical CenterHinesUSA
  4. 4.Department of Psychology, Center for Ethics EducationFordham UniversityBronxUSA

Personalised recommendations