Conducting Research with Lesbian, Gay, and Bisexual Populations: Navigating Research Ethics Board Reviews

Tufford, Lea; Newman, Peter A.; Brennan, David J.; Craig, Shelley L.; Woodford, Michael R.

doi:10.1080/10538720.2012.697039

Cited by 31 publications

(14 citation statements)

References 19 publications

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“…Furthermore, ethics research can help determine adolescents’ capacity to consent to various research methodologies. Without such evidence to guide their decisions, IRBs must rely on subjective judgments; if they believe that study‐related discomfort will be greater than discomfort encountered in everyday life or during routine physical or psychological examinations, the study is considered to pose “greater than minimal risk.” Ethics research can assess the extent of research risks and help identify appropriate safeguards (e.g., having an adult serve as a youth advocate when parental permission requirements are waived).…”

Section: Introductionmentioning

confidence: 99%

Sexual and Gender Minority Adolescents’ Views On HIV Research Participation and Parental Permission: A Mixed‐Methods Study

Mustanski¹,

Coventry²,

Macapagal³

et al. 2017

Perspect Sexual Reproductive

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CONTEXT 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. METHODS 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. RESULTS 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. CONCLUSIONS 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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Section: Introductionmentioning

confidence: 99%

Sexual and Gender Minority Adolescents’ Views On HIV Research Participation and Parental Permission: A Mixed‐Methods Study

Mustanski¹,

Coventry²,

Macapagal³

et al. 2017

Perspect Sexual Reproductive

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“…Indeed, we found that 68% of SGM youth who were not out would refuse to participate in a biomedical HIV prevention study that required guardian permission for these reasons (Fisher, Arbeit, Dumont, Macapagal, & Mustanski, 2016). In both cases, investigators attempting to increase SGM youth’s representation in sexual health survey research may face challenges recruiting unbiased samples of youth if guardian permission is not waived, thereby limiting the generalizability of findings to SGM youth whose parents are accepting of their sexuality and gender identity (Fisher & Mustanski, 2014; Mustanski, 2011; Tufford, Newman, Brennan, Craig, & Woodford, 2012). In addition, investigators may be more inclined to exclude SGM adolescents from sexual health research due to anticipated or actual difficulties obtaining IRB approval or waivers of guardian permission (Miller, Forte, Wilson, & Greene, 2006; Mustanski, 2011).…”

Section: Introductionmentioning

confidence: 99%

“I Won’t Out Myself Just to Do a Survey”: Sexual and Gender Minority Adolescents’ Perspectives on the Risks and Benefits of Sex Research

et al. 2016

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Sexual and gender minority (SGM) adolescents under age 18 are underrepresented in sexual health research. Exclusion of SGM minors from these studies has resulted in a lack of knowledge about the risks and benefits youth experience from sexual health research participation. Institutional Review Boards’ (IRB) overprotective stances toward research risks and requirements for guardian consent for SGM research are significant barriers to participation, though few have investigated SGM youth’s perspectives on these topics. This study aimed to empirically inform decisions about guardian consent for sexuality survey studies involving SGM youth. Seventy-four SGM youth aged 14–17 completed an online survey of sexual behavior and SGM identity, and a new measure that compared the discomfort of sexual health survey completion to everyday events and exemplars of “minimal risk” research (e.g., behavioral observation). Youth described survey benefits and drawbacks and perspectives on guardian permission during an online focus group. Participants felt about the same as or more comfortable completing the survey compared to other research procedures, and indicated that direct and indirect participation benefits outweighed concerns about privacy and emotional discomfort. Most would not have participated if guardian permission were required, citing negative parental attitudes about adolescent sexuality and SGM issues and not being “out” about their SGM identity. Findings suggest that sexual health survey studies meet minimal risk criteria, are appropriate for SGM youth, and that recruitment would not be possible without waivers of guardian consent. Decreasing barriers to research participation would dramatically improve our understanding of sexual health among SGM youth.

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“…However, exceptions may exist "when this conflicts with youths' emerging desire for privacy and independence" ( Denissen et al, 2010, p. 570), or when seeking parental consent may put the adolescent at unnecessary risk. For example, asking LGBTQ youths under 18 years of age to provide parental consent to their participation in research inquiries could put participants at significant risk if their parents are unaware or unsupportive of their LGBTQ status, and may result in less diverse samples ( Elze, 2003;Mustanski, 2011;Tufford, Newman, Brennan, Craig, & Woodford, 2012). This issue of parental knowledge and support may also apply to other populations of youths (for example, youths who are homeless or youths engaging in illegal or risky behavior).…”

Section: Consentmentioning

confidence: 99%

Pitfalls, Potentials, and Ethics of Online Survey Research: LGBTQ and Other Marginalized and Hard-to-Access Youths

McInroy

2016

Social Work Research

118

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Online research methodologies may serve as an important mechanism for population-focused data collection in social work research. Online surveys have become increasingly prevalent in research inquiries with young people and have been acknowledged for their potential in investigating understudied and marginalized populations and subpopulations, permitting increased access to communities that tend to be less visible-and thus often less studied-in offline contexts. Lesbian, gay, bisexual, transgender, and queer (LGBTQ) young people are a socially stigmatized, yet digitally active, youth population whose participation in online surveys has been previously addressed in the literature. Many of the opportunities and challenges of online survey research identified with LGBTQ youths may be highly relevant to other populations of marginalized and hard-to-access young people, who are likely present in significant numbers in the online environment (for example, ethnoracialized youths and low-income youths). In this article, the utility of online survey methods with marginalized young people is discussed, and recommendations for social work research are provided.

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Conducting Research with Lesbian, Gay, and Bisexual Populations: Navigating Research Ethics Board Reviews

Cited by 31 publications

References 19 publications

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

“I Won’t Out Myself Just to Do a Survey”: Sexual and Gender Minority Adolescents’ Perspectives on the Risks and Benefits of Sex Research

Pitfalls, Potentials, and Ethics of Online Survey Research: LGBTQ and Other Marginalized and Hard-to-Access Youths

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