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

Michael Newcomb*, Antonia Clifford, George J Greene, Brian Mustanski

*Corresponding author for this work

Research output: Contribution to journalArticle

7 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)443-449
Number of pages7
JournalJournal of Adolescent Health
Volume59
Issue number4
DOIs
StatePublished - Oct 1 2016

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Parents
Research
Transgender Persons
Health Services Research
Research Ethics Committees
Heterosexuality
Health
Sexual Minorities
Young Adult
Decision Making
Demography
HIV
Interviews

Keywords

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

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Public Health, Environmental and Occupational Health
  • Psychiatry and Mental health

Cite this

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title = "Parent Perspectives About Sexual Minority Adolescent Participation in Research and Requirements of Parental Permission",
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",
author = "Michael Newcomb and Antonia Clifford and Greene, {George J} and Brian Mustanski",
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AU - Newcomb, Michael

AU - Clifford, Antonia

AU - Greene, George J

AU - Mustanski, Brian

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N2 - 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.

AB - 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.

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