Sexual and Gender Minority Adolescents' Views On HIV Research Participation and Parental Permission: A Mixed-Methods Study.
Sexual and Gender Minority Adolescents' Views On HIV Research Participation and Parental Permission: A Mixed-Methods Study.
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DOI：
10.1363/psrh.12027
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发表时间：
2017-06
影响因子：
5.8
通讯作者：
Fisher CB
中科院分区：
文献类型：
--
作者：
Mustanski B;Coventry R;Macapagal K;Arbeit MR;Fisher CB
性和性别少数青少年在艾滋病毒研究中的代表性不足，部分原因是机构审查委员会（IRB）不愿意放弃这些研究的父母许可要求。了解青少年对父母许可的看法以及参与艾滋病毒研究的风险和益处对于告知循证IRB决定至关重要。2015年，74名14-17岁的性和性别少数青少年参加了一个在线焦点小组，他们的数据被用来研究参与一项假设的艾滋病毒监测研究的风险和益处，以及父母许可和充分保护的必要性。按主题分析数据;混合方法分析考察了青少年是否对父母出柜，是否对父母许可的担忧有所不同。大多数青少年，特别是那些没有向父母坦白的青少年，如果需要父母的许可，他们不愿意参加艾滋病毒研究。人们认为参与的好处包括克服艾滋病毒检测的障碍，促进性和性别少数青年的健康。几乎没有发现参与的风险。青少年提出了研究人员可以采取的几个步骤，以促进知情的决策参与研究，并确保未成年人的安全，在没有父母的许可，其中包括将多媒体演示纳入同意过程，并解释研究人员的动机进行研究。受访者认为，艾滋病毒监测研究的好处大于风险。要求父母许可可能会将许多性取向和性别少数的青少年排除在艾滋病毒研究之外，特别是如果他们没有外出的话。
Sexual and gender minority adolescents are underrepresented in HIV research, in part because institutional review boards (IRBs) are reluctant to waive parental permission requirements for these studies. Understanding teenagers’ perspectives on parental permission and the risks and benefits of participating in HIV research is critical to informing evidence-based IRB decisions. Data from 74 sexual and gender minority adolescents aged 14–17 who participated in an online focus group in 2015 were used to examine perspectives on the risks and benefits of participation in a hypothetical HIV surveillance study and on the need for parental permission and adequate protections. Data were analyzed thematically; mixed methods analyses examined whether concerns about parental permission differed by whether teenagers were out to their parents. Most adolescents, especially those who were not out to their parents, would be unwilling to participate in an HIV study if parental permission were required. Perceived benefits of participation included overcoming barriers to HIV testing and contributing to the health of sexual and gender minority youth. Few risks of participation were identified. Adolescents suggested several steps that researchers could take to facilitate informed decision making about research participation and ensure minors’ safety in the absence of parental permission; these included incorporating multimedia presentations into the consent process and explaining researchers’ motivations for conducting the study. Respondents believed that the benefits of HIV surveillance research outweighed the risks. Requiring parental permission may exclude many sexual and gender minority teenagers from taking part in HIV research, especially if they are not out.
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影响因子：
7.6
作者：
Garofalo, R;Deleon, J;Harper, GW
通讯作者：
Harper, GW
影响因子：
4.2
作者：
Magee, Joshua C.;Bigelow, Louisa;Mustanski, Brian S.
通讯作者：
Mustanski, Brian S.
DOI：
10.1177/1556264616633963
发表时间：
2016-02
期刊：
Journal of empirical research on human research ethics : JERHRE
影响因子：
--
作者：
Fisher CB;Arbeit MR;Dumont MS;Macapagal K;Mustanski B
通讯作者：
Mustanski B
影响因子：
3.8
作者：
Greene, George J.;Andrews, Rebecca;Kuper, Laura;Mustanski, Brian
通讯作者：
Mustanski, Brian
影响因子：
3.3
作者：
Fisher, Celia B.;Mustanski, Brian
通讯作者：
Mustanski, Brian