Self-Consent for HIV Prevention Research Involving Sexual and Gender Minority Youth: Reducing Barriers Through Evidence-Based Ethics.

Self-Consent for HIV Prevention Research Involving Sexual and Gender Minority Youth: Reducing Barriers Through Evidence-Based Ethics.
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DOI:
10.1177/1556264616633963
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发表时间:
2016-02
期刊:
Journal of empirical research on human research ethics : JERHRE
影响因子:
--
通讯作者:
Mustanski B
Mustanski B
中科院分区:
其他
文献类型:
--
作者:
Fisher CB;Arbeit MR;Dumont MS;Macapagal K;Mustanski B

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本项目调查了性少数和性别少数青年(SGMY)对监护人允许进行暴露前预防(PrEP)依从性试验的态度,以及他们是否准备好提供知情、理性和自愿的自我同意。60名性活跃的SGMY(14-17岁)在观看了描述PrEP依从性研究的视频后参加了在线调查和异步焦点小组问题。年轻人的回答强调,监护人的许可是参与研究的重大障碍,尤其是对那些没有向家人“出柜”的人。青年表现出对研究的好处、医学副作用、保密风险和随机分配的理解,并对提问和拒绝参与感到自在。关于参与的推理表明考虑了健康风险和益处、个人性行为、每天服药的能力、后勤和试验后获得PrEP的能力。结果表明青少年有能力自我同意适合年龄和人口的程序,并强调了经验研究对告知IRB对SGMY研究参与者的保护的价值。
This project examined the attitudes of sexual and gender minority youth (SGMY) toward guardian permission for a pre-exposure prophylaxis (PrEP) adherence trial and their preparedness to provide informed, rational and voluntary self-consent. Sixty sexually active SGMY (ages 14–17) participated in online survey and asynchronous focus group questions after watching a video describing a PrEP adherence study. Youth responses highlighted guardian permission as a significant barrier to research participation, especially for those not “out” to families. Youth demonstrated understanding of research benefits, medical side effects, confidentiality risks, and random assignment and felt comfortable asking questions and declining participation. Reasoning about participation indicated consideration of health risks and benefits, personal sexual behavior, ability to take pills everyday, logistics, and post-trial access to PrEP. Results demonstrate youth’s ability to self-consent to age- and population- appropriate procedures, and underscore the value of empirical studies for informing IRB protections of SGMY research participants.