Skip to main content
SpringerLink
Log in

“I Won’t Out Myself Just to Do a Survey”: Sexual and Gender Minority Adolescents’ Perspectives on the Risks and Benefits of Sex Research

  • Original Paper
  • Published:
Archives of Sexual Behavior Aims and scope Submit manuscript

Abstract

Sexual and gender minority (SGM) adolescents under age 18 are underrepresented in sexual health research. Exclusion of SGM minors from these studies has resulted in a lack of knowledge about the risks and benefits youth experience from sexual health research participation. Institutional Review Boards’ (IRB) overprotective stances toward research risks and requirements for guardian consent for SGM research are significant barriers to participation, though few have investigated SGM youth’s perspectives on these topics. This study aimed to empirically inform decisions about guardian consent for sexuality survey studies involving SGM youth. A total of 74 SGM youth aged 14–17 completed an online survey of sexual behavior and SGM identity, and a new measure that compared the discomfort of sexual health survey completion to everyday events and exemplars of minimal risk research (e.g., behavioral observation). Youth described survey benefits and drawbacks and perspectives on guardian permission during an online focus group. Participants felt about the same as or more comfortable completing the survey compared to other research procedures, and indicated that direct and indirect participation benefits outweighed concerns about privacy and emotional discomfort. Most would not have participated if guardian permission was required, citing negative parental attitudes about adolescent sexuality and SGM issues and not being “out” about their SGM identity. Findings suggest that sexual health survey studies meet minimal risk criteria, are appropriate for SGM youth, and that recruitment would not be possible without waivers of guardian consent. Decreasing barriers to research participation would dramatically improve our understanding of sexual health among SGM youth.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Notes

  1. The terms “sexual and gender minority” and “SGM” are used here instead of “lesbian, gay, bisexual, and transgender” or “LGBT” to be more inclusive of other identities that fall outside the LGBT umbrella.

References

  • Axinn, W. G., & Pearce, L. D. (2006). Mixed method data collection strategies. New York: Cambridge University Press.

    Book  Google Scholar 

  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–102.

    Article  Google Scholar 

  • Bruzzese, J., & Fisher, C. B. (2003). Assessing and enhancing the research consent capacity of children and youth. Applied Developmental Science, 7, 13–26. Retrieved from http://dx.doi.org/10.1207/S1532480XADS0701_2

  • Carey, M. A., & Smith, M. W. (1994). Capturing the group effect in focus groups: A special concern in analysis. Qualitative Health Research, 4, 123–127. doi:10.1177/104973239400400108.

    Article  Google Scholar 

  • CDC. (2013). HIV among transgender people in the United States. Retrieved from http://www.cdc.gov/hiv/pdf/risk_transgender.pdf.

  • CDC. (2015a). 2015 Sexually Transmitted Diseases Treatment Guidelines: Special Populations. Retrieved from http://www.cdc.gov/std/tg2015/specialpops.htm.

  • CDC. (2015b). HIV among youth. Retrieved from http://www.cdc.gov/hiv/group/age/youth/index.html.

  • D’Augelli, A. R., Grossman, A. H., & Starks, M. T. (2008). Families of gay, lesbian, and bisexual youth: What do parents and siblings know and how do they react? Journal of GLBT Family Studies, 4, 95–115. doi:10.1080/15504280802084506.

    Article  Google Scholar 

  • D’Augelli, A. R., Hershberger, S. L., & Pilkington, N. W. (1998). Lesbian, gay, and bisexual youth and their families: Disclosure of sexual orientation and its consequences. American Journal of Orthopsychiatry, 68, 361–371.

    Article  PubMed  Google Scholar 

  • Dedoose. (2015). Web application for managing, analyzing, and presenting qualitative and mixed method data (Version 4.5.91). Los Angeles, CA: SocioCultural Research Consultants, LLC.

  • Department of Health and Human Services. (2009). Title 45 Public Welfare, Part 46, Code of Federal Regulations, Protection of Human Subjects. Retrieved from http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.html.

  • Fisher, C. B. (1999). Relational ethics and research with vulnerable populations. Retrieved from Rockville, MD: http://www.bioethics.gov/reports/past_commissions/nbac_mental2.pdf.

  • Fisher, C. B. (2002). Participant consultation: Ethical insights into parental permission and confidentiality procedures for policy relevant research with youth. In R. M. Lerner, F. Jacobs, & D. Wertlieb (Eds.), Handbook of applied developmental science: promoting positive child, adolescent, and family development through research, policies, and programs (Vol. 4, pp. 371–396). Thousand Oaks, CA: Sage.

    Google Scholar 

  • Fisher, C. B. (2004). Ethics in drug abuse and related HIV risk research. Applied Developmental Science, 8, 91–103.

    Article  Google Scholar 

  • 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. doi:10.1177/1556264616633963.

    PubMed  PubMed Central  Google Scholar 

  • Fisher, C. B., Brunnquell, D. J., Hughes, D. L., Liben, L. S., Maholmes, V., Plattner, S., … Sussman, E. J. (2013). Preserving and enhancing the responsible conduct of research involving children and youth: A response to proposed changes in federal regulations. Social Policy Report, 27, 3–15.

    Google Scholar 

  • Fisher, C. B., Kornetsky, S. Z., & Prentice, E. D. (2007). Determining risk in pediatric research with no prospect of direct benefit: Time for a national consensus on the interpretation of federal regulations. American Journal of Bioethics, 7, 5–10. doi:10.1080/15265160601171572.

    Article  PubMed  Google Scholar 

  • Fisher, C. B., & Masty, J. K. (2006). A goodness-of-fit ethic for informed consent to pediatric cancer research. In R. T. Brown (Ed.), Comprehensive handbook of childhood cancer and sickle cell disease: A biopsychosocial approach (pp. 205–217). New York: Oxford University Press.

    Google Scholar 

  • Fisher, C. B., & Mustanski, B. (2014). Reducing health disparities and enhancing the responsible conduct of research involving LGBT youth. Hastings Center Report, 44(Suppl. 4), S28–31. doi:10.1002/hast.367.

    Article  PubMed  PubMed Central  Google Scholar 

  • Fisher, C. B., & Ragsdale, K. (2006). A goodness-of-fit ethics for multicultural research. In J. E. Trimble & C. B. Fisher (Eds.), The handbook of ethical research with ethnocultural populations and communities (pp. 3–26). Thousand Oaks, CA: Sage.

    Google Scholar 

  • Fisher, C. B., & Vacanti-Shova, K. (2012). The responsible conduct of psychological research: An overview of ethical principles, APA Ethics Code standards, and federal regulations. In S. J. Knapp (Ed.), APA handbook of ethics in psychology (1st ed., Vol. 2, pp. 335–370). Washington, DC: American Psychological Association.

    Google Scholar 

  • Fleiss, J. L. (1971). Measuring nominal scale agreement among many raters. Psychological Bulletin, 76, 378–382. doi:10.1037/h0031619.

    Article  Google Scholar 

  • Fox, F. E., Morris, M., & Rumsey, N. (2007). Doing synchronous online focus groups with young people: Methodological reflections. Qualitative Health Research, 17, 539–547. doi:10.1177/1049732306298754.

    Article  PubMed  Google Scholar 

  • Garofalo, R., Wolf, C. R., Kessel, S., Palfrey, J., & DuRant, R. H. (1998). The association between health risk behaviors and sexual orientation among a school-based sample of adolescents. Pediatrics, 101, 895–902.

    Article  PubMed  Google Scholar 

  • Gibson, B. E., Stasiulis, E., Gutfreund, S., McDonald, M., & Dade, L. (2011). Assessment of children’s capacity to consent for research: A descriptive qualitative study of researchers’ practices. Journal of Medical Ethics, 37, 504–509.

    Article  PubMed  Google Scholar 

  • Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago, IL: Aldine Publishing Company.

    Google Scholar 

  • Glick, S. N., & Golden, M. R. (2014). Early male partnership patterns, social support, and sexual risk behavior among young men who have sex with men. AIDS and Behavior, 18, 1466–1475. doi:10.1007/s10461-013-0678-7.

    Article  PubMed  PubMed Central  Google Scholar 

  • Greene, G. J., Andrews, R., Kuper, L., & Mustanski, B. (2014). Intimacy, monogamy, and condom problems drive unprotected sex among young men in serious relationships with other men: A mixed methods dyadic study. Archives of Sexual Behavior, 43, 73–87. doi:10.1007/s10508-013-0210-1.

    Article  PubMed  PubMed Central  Google Scholar 

  • Greene, G. J., Fisher, K. A., Kuper, L., Andrews, R., & Mustanski, B. (2015). “Is this normal? Is this not normal? There’s no set example”: Sexual health intervention preferences of LGBT youth in romantic relationships. Sexuality Research and Social Policy, 12, 1–14. doi:10.1007/s13178-014-0169-2.

    Article  PubMed  Google Scholar 

  • Guttmacher Institute. (2015). State policies in brief: An overview of minors’ consent law. Retrieved from http://www.guttmacher.org/statecenter/spibs/spib_OMCL.pdf.

  • Institute of Medicine. (2004). Ethical conduct of clinical research involving children. Washington, DC: National Academies Press.

    Google Scholar 

  • Institute of Medicine. (2011). The health of lesbian, gay, bisexual, and transgender people: Building a foundation for better understanding. Washington, DC: National Academies Press.

    Google Scholar 

  • Koelch, M., Singer, H., Prestel, A., Burkert, J., Schulze, U., & Fegert, J. M. (2009). “…because I am something special” or “I think I will be something like a guinea pig”: Information and assent of legal minors in clinical trials–assessment of understanding, appreciation and reasoning. Child and Adolescent Psychiatry and Mental Health, 3, 2.

    Article  PubMed  PubMed Central  Google Scholar 

  • Krueger, R. A. (2009). Focus groups: A practical guide for applied research (4th ed.). Los Angeles: Sage.

    Google Scholar 

  • Kuyper, L., de Wit, J., Adam, P., & Woertman, L. (2012). Doing more good than harm? The effects of participation in sex research on young people in the Netherlands. Archives of Sexual Behavior, 41, 497–506. doi:10.1007/s10508-011-9780-y.

    Article  PubMed  Google Scholar 

  • Kuyper, L., Wijsen, C., & de Wit, J. (2014). Distress, need for help, and positive feelings derived from participation in sex research: Findings of a population study in the Netherlands. Journal of Sex Research, 51, 351–358. doi:10.1080/00224499.2012.736092.

    Article  PubMed  Google Scholar 

  • Labott, S. M., Johnson, T. P., Fendrich, M., & Feeny, N. C. (2013). Emotional risks to respondents in survey research: Some empirical evidence. Journal of Empirical Research on Human Research Ethics, 8, 53–66. doi:10.1525/jer.2013.8.4.53.

    Article  PubMed  PubMed Central  Google Scholar 

  • Langhinrichsen-Rohling, J., Arata, C., O’Brien, N., Bowers, D., & Klibert, J. (2006). Sensitive research with adolescents: Just how upsetting are self-report surveys anyway? Violence and Victims, 21, 425–444.

    Article  PubMed  Google Scholar 

  • Lindley, L. L., & Walsemann, K. M. (2015). Sexual orientation and risk of pregnancy among New York City high-school students. American Journal of Public Health, 105, 1379–1386. doi:10.2105/AJPH.2015.302553.

    Article  PubMed  Google Scholar 

  • Magee, J. C., Bigelow, L., Dehaan, S., & Mustanski, B. S. (2012). Sexual health information seeking online: A mixed-methods study among lesbian, gay, bisexual, and transgender young people. Health Education and Behavior, 39, 276–289. doi:10.1177/1090198111401384.

    Article  PubMed  Google Scholar 

  • Masty, J., & Fisher, C. B. (2008). A goodness-of-fit approach to informed consent for pediatric intervention research. Ethics and Behavior, 18, 139–160.

    Article  Google Scholar 

  • Miller, V. A., Drotar, D., & Kodish, E. (2004). Children’s competence for assent and consent: A review of empirical findings. Ethics and Behavior, 14, 255–295.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Moser, D. J., Schultz, S. K., Arndt, S., Benjamin, M. L., Fleming, F. W., Brems, C. S., … Andreasen, N. C. (2002). Capacity to provide informed consent for participation in schizophrenia and HIV research. American Journal of Psychiatry, 159, 1201–1207.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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. doi:10.1016/j.amepre.2016.02.026.

    PubMed  Google Scholar 

  • Mustanski, B., Newcomb, M., & Garofalo, R. (2011). Mental health of lesbian, gay, and bisexual youth: A developmental resiliency perspective. Journal of Gay & Lesbian Social Services, 23, 204–225. doi:10.1080/10538720.2011.561474.

    Article  Google Scholar 

  • National Human Research Protections Advisory Committee. (2001). Children’s workgroup report: April 2001 meeting. Retrieved from http://www.hhs.gov/ohrp/nhrpac/mtg04-01/childworkgroup4-5-01.pdf.

  • Petrie, K. J., Faasse, K., Notman, T. A., & O’Carroll, R. (2013). How distressing is it to participate in medical research? A calibration study using an Everyday Events questionnaire. JRSM Short Reports. doi:10.1177/2042533313493271.

    PubMed  PubMed Central  Google Scholar 

  • Ryan, C., Huebner, D., Diaz, R. M., & Sanchez, J. (2009). Family rejection as a predictor of negative health outcomes in white and Latino lesbian, gay, and bisexual young adults. Pediatrics, 123, 346–352.

    Article  PubMed  Google Scholar 

  • Ryan, C., Russell, S., Huebner, D., Diaz, R., & Sanchez, J. (2010). Family acceptance in adolescents and the health of LGBT young adults. Journal of Child and Adolescent Psychiatric Nursing, 23, 205–213.

    Article  PubMed  Google Scholar 

  • Saewyc, E. M., Bearinger, L. H., Blum, R. W., & Resnick, M. D. (1999). Sexual intercourse, abuse and pregnancy among adolescent women: Does sexual orientation make a difference? Family Planning Perspectives, 31, 127–132.

    Article  PubMed  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • Secretary’s Advisory Committee for Human Research Protections. (2005). Meeting presentations and reports (April 18–19, November 1). Retrieved from http://www.hhs.gov/ohrp/archive/sachrp/mtgings/mtg04-05/mtg04-05.htm.

  • Society for Adolescent Medicine. (2004). Confidential health care for adolescents: Position paper of the Society for Adolescent Medicine. Journal of Adolescent Health, 35, 160–167.

    Article  Google Scholar 

  • Steinberg, L. (2008). A social neuroscience perspective on adolescent risk-taking. Developmental Review, 28, 78–106. doi:10.1016/j.dr.2007.08.002.

    Article  PubMed  PubMed Central  Google Scholar 

  • Tornello, S. L., Riskind, R. G., & Patterson, C. J. (2014). Sexual orientation and sexual and reproductive health among adolescent young women in the United States. Journal of Adolescent Health, 54, 160–168. doi:10.1016/j.jadohealth.2013.08.018.

    Article  PubMed  Google Scholar 

  • Tufford, L., Newman, P. A., Brennan, D. J., Craig, S. L., & Woodford, M. R. (2012). Conducting research with lesbian, gay, and bisexual populations: Navigating research ethics board reviews. Journal of Gay & Lesbian Social Services, 24, 221–240. doi:10.1080/10538720.2012.697039.

    Article  Google Scholar 

  • UCSD Task Force on Decisional Capacity. (2003). Procedures for determination of decisional capacity in persons participating in research protocols. Retrieved from http://irb.ucsd.edu/decisional.shtml

  • United Nations General Assembly. (1989). Convention on the Rights of the Child (A/RES/44/25). Retrieved from http://www.un.org/documents/ga/res/44/a44r025.htm

  • US Department of Health and Human Services. (2015). Certificates of confidentiality. Retrieved from https://grants.nih.gov/grants/policy/coc/index.htm.

  • Ybarra, M. L., DuBois, L. Z., Parsons, J. T., Prescott, T. L., & Mustanski, B. (2014). Online focus groups as an HIV prevention program for gay, bisexual, and queer adolescent males. AIDS Education and Prevention, 26, 554–564. doi:10.1521/aeap.2014.26.6.554.

    Article  PubMed  PubMed Central  Google Scholar 

  • Yeater, E., Miller, G., Rinehart, J., & Nason, E. (2012). Trauma and sex surveys meet minimal risk standards: Implications for Institutional Review Boards. Psychological Science, 23, 780–787. doi:10.1177/0956797611435131.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

We are grateful to Zenaida Rivera and Alan Ashbeck for their assistance with development of study materials, participant recruitment, and data collection. We also would like to thank members of the IMPACT Program Youth Advisory Council and our Scientific Advisory Council for their feedback on all aspects of the study procedures, and our participants, who generously gave us their time and from whom we learned so much.

Author information

Authors and Affiliations

  1. Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 625 N. Michigan Avenue, Suite 2700, Chicago, IL, 60611, USA

    Kathryn Macapagal, Ryan Coventry & Brian Mustanski

  2. Center for Ethics Education & Department of Psychology, Fordham University, Bronx, NY, USA

    Miriam R. Arbeit & Celia B. Fisher

Authors
  1. Kathryn Macapagal
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Ryan Coventry
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Miriam R. Arbeit
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Celia B. Fisher
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Brian Mustanski
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Kathryn Macapagal.

Ethics declarations

Conflict of interest

Kathryn Macapagal, Ryan Coventry, Miriam Arbeit, Celia Fisher, and Brian Mustanski have no conflicts of interest to disclose.

Ethical Approval

This study was supported by R01MD009561 from the National Institute on Minority Health and Health Disparities (PIs: Brian Mustanski and Celia B. Fisher). The content in this manuscript is solely the responsibility of the authors and does not reflect the views of the National Institutes of Health. All procedures performed in studies involving human participants were in accordance with the ethical standards of the Northwestern University and Fordham University IRBs and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants in this study.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Macapagal, K., Coventry, R., Arbeit, M.R. et al. “I Won’t Out Myself Just to Do a Survey”: Sexual and Gender Minority Adolescents’ Perspectives on the Risks and Benefits of Sex Research. Arch Sex Behav 46, 1393–1409 (2017). https://doi.org/10.1007/s10508-016-0784-5

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10508-016-0784-5

Keywords

Search

Navigation