title: "I Won't Out Myself Just to Do a Survey": Sexual and Gender Minority Adolescents' Perspectives on the Risks and Benefits of Sex Research.
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.
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 625 N. Michigan Avenue, Suite 2700, Chicago, IL, 60611, USA. kathryn.macapagal@northwestern.edu.
authors.forename: Kathryn
authors.initials: K
authors.lastname: Macapagal
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 625 N. Michigan Avenue, Suite 2700, Chicago, IL, 60611, USA.
authors.forename: Ryan
authors.initials: R
authors.lastname: Coventry
authors.affiliation: Center for Ethics Education & Department of Psychology, Fordham University, Bronx, NY, USA.
authors.forename: Miriam R
authors.initials: MR
authors.lastname: Arbeit
authors.affiliation: Center for Ethics Education & Department of Psychology, Fordham University, Bronx, NY, USA.
authors.forename: Celia B
authors.initials: CB
authors.lastname: Fisher
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 625 N. Michigan Avenue, Suite 2700, Chicago, IL, 60611, USA.
authors.forename: Brian
authors.initials: B
authors.lastname: Mustanski
mesh_terms: D000293:Adolescent; D032984:Ethics, Research; D005260:Female; D017144:Focus Groups; D005783:Gender Identity; D006801:Humans; D008297:Male; D012106:Research; D012107:Research Design; D012725:Sexual Behavior; D000072339:Sexual and Gender Minorities / Q000523:psychology*; D019529:Sexuality / Q000523:psychology*; D011795:Surveys and Questionnaires; D014481:United States
keywords: Adolescence; Parental consent; Research ethics; Sexual behavior; Sexual orientation