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J Adolesc Health. 2016 Oct;59(4):443-9. doi: 10.1016/j.jadohealth.2016.05.014. Epub 2016 Jul 26.

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

Author information

1
Institute for Sexual and Gender Minority Health and Wellbeing and Department of Medical Social Sciences, Northwestern University, Chicago, Illinois. Electronic address: newcomb@northwestern.edu.
2
Institute for Sexual and Gender Minority Health and Wellbeing and Department of Medical Social Sciences, Northwestern University, Chicago, Illinois.

Abstract

PURPOSE:

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.

KEYWORDS:

HIV surveillance; Informed consent; LGBTQ adolescents; Parents; Research ethics

[Indexed for MEDLINE]

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