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

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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.

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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.

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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.

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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

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  1. Kathryn Macapagal
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  2. Ryan Coventry
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  3. Miriam R. Arbeit
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  4. Celia B. Fisher
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Correspondence to Kathryn Macapagal.

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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.

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

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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

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