Parent Perspectives About Sexual Minority Adolescent Participation in Research and Requirements of Parental Permission

详细信息    查看全文

• 作者：Michael E. Newcomb ; Ph.D. ; ^{newcomb@northwestern.edu" class="auth_mail" title="E-mail the corresponding author} ; Antonia Clifford ; M.S.W. ; George J. Greene ; Ph.D. ; Brian Mustanski ; Ph.D.
• 关键词：LGBTQ adolescents ; Parents ; Research ethics ; Informed consent ; HIV surveillance
• 刊名：Journal of Adolescent Health
• 出版年：2016
• 出版时间：October 2016
• 年：2016
• 卷：59
• 期：4
• 页码：443-449
• 全文大小：322 K

文摘

Lesbian, gay, bisexual, transgender, and other sexual and gender minority (LGBTQ) adolescents and young adults experience health inequities relative to heterosexuals but may be reluctant to participate in research that requires guardian permission. Institutional review boards are often reluctant to approve studies without parental permission because of concerns about parent reactions. There is little to no data from the parent's perspective on these issues. We aimed to understand parent perspectives on parental permission requirements for minimal risk studies of LGBTQ health inequities.

Methods

We conducted semistructured interviews with 31 parents of LGBTQ individuals. We presented a vignette describing an HIV behavioral surveillance protocol and assessed beliefs about whether parental permission should be required under various conditions (i.e., varying adolescent demographics, study procedures).

Results

Most parents (74.2%) believed that parental permission should not be required, and this percent increased when considering adolescent participants for whom permission would be less feasible or potentially more dangerous (e.g., homeless adolescents). Qualitative analyses revealed that many parents were concerned about research quality and negative consequences for adolescents if permission was required. Others wanted to help support their child in making decisions about research and health care.

Conclusions

Most parents believed that parental permission should not be required for a minimal risk study, and the reasons for their beliefs fell squarely in line with federal regulations regarding adolescent self-consent to research. Studies of LGBTQ adolescent health inequities should receive waivers of parental permission to obtain representative samples and minimize risk of harm to the adolescent.