Macapagal Kathryn, Coventry Ryan, Arbeit Miriam R, Fisher Celia B, Mustanski Brian
Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 625 N. Michigan Avenue, Suite 2700, Chicago, IL, 60611, USA.
Center for Ethics Education & Department of Psychology, Fordham University, Bronx, NY, USA.
Arch Sex Behav. 2017 Jul;46(5):1393-1409. doi: 10.1007/s10508-016-0784-5. Epub 2016 Jul 28.
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.
18岁以下的性取向和性别少数群体(SGM)青少年在性健康研究中的代表性不足。将SGM未成年人排除在这些研究之外,导致我们对青少年参与性健康研究所经历的风险和益处缺乏了解。机构审查委员会(IRB)对研究风险的过度保护立场以及对SGM研究要求监护人同意,是参与研究的重大障碍,尽管很少有人调查SGM青少年对这些话题的看法。本研究旨在通过实证为涉及SGM青少年的性取向调查研究中监护人同意的决策提供参考。共有74名年龄在14至17岁的SGM青少年完成了一项关于性行为和SGM身份的在线调查,以及一项新的测量方法,该方法将完成性健康调查的不适感与日常事件和最低风险研究示例(如行为观察)进行比较。青少年在在线焦点小组中描述了调查的利弊以及对监护人许可的看法。与其他研究程序相比,参与者在完成调查时感觉相同或更自在,并表示直接和间接参与的好处超过了对隐私和情绪不适的担忧。大多数人表示,如果需要监护人许可,他们就不会参与,理由是父母对青少年性行为和SGM问题持负面态度,以及他们没有公开自己的SGM身份。研究结果表明,性健康调查研究符合最低风险标准,适合SGM青少年,并且如果不免除监护人同意,招募将不可能实现。减少研究参与的障碍将极大地改善我们对SGM青少年性健康的理解。