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

Abstract

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.

Patient–Provider Communication Barriers and Facilitators to HIV and STI Preventive Services for Adolescent MSM

“…Although this concern was particularly salient among youth who were not out to parents, our data indicate that providers should not conclude that parents who are aware of their son’s sexual orientation identity are accepting of the patient’s sexual orientation or behaviors nor that youth who are out would be unconcerned about their physician sharing such information with parents. These results contribute to a limited but growing empirical literature on the complex relationship between parental support and health among sexual minority adolescents 382939403541 . While some research suggests that parental support for youth who disclosed their sexual orientation is associated with better health results, 4243 other research suggests that parental monitoring of and communication about same-sex sexual activity may actually be associated with increased sexual risk behaviors 44 .…”

“Free Testing and PrEP without Outing Myself to Parents:” Motivation to participate in oral and injectable PrEP clinical trials among adolescent men who have sex with men

“…These items reflect fundamental principles of research ethics and [ 53 ] were developed and refined from items in prior online asynchronous focus groups and surveys on ethical issues in HIV prevention research and sexual health care involving LGBTQ youth. [ 32 – 34 , 38 ] Six items assessed perceptions of PrEP specific health benefits and risks including: daily protection against HIV; not having to rely on a partner’s use of condoms, common and rare side effects and need to continue to use condoms for full protection against HIV and STI protection. Seven items assessed attitudes toward research that provided access to sexual health services including regularly scheduled medical checkups, sexual health counseling, being able to talk to staff affirming of youth’s sexual orientation, free HIV and STI testing, whether free access to PrEP would lead youth to participate in the study even if they otherwise would have refused and whether youth were more likely to get an HIV test from participating in the research or from their regular doctor.…”

“…[ 27 – 29 ] One recruitment barrier is the requirement for guardian permission that many AMSM fear will result in being outed to or punished by their parents. [ 30 – 34 ] Increasingly, states are expanding mature minor rules to include adolescent independent consent to HIV testing, treatment, and prevention. [ 35 , 36 ] This will most likely lead to an increase in Institutional Review Board waivers of guardian permission and implementation of alternative protections such as participant consent advocates and assessment of youth’s independent consent capacity.…”

“…The first area reflects studies indicating research participation is influenced by the extent to which young MSM evaluate the preventive health benefits of oral and injectable PrEP balanced by concerns regarding the continued use of condoms and medication side effects. [ 4 , 15 , 20 , 34 , 38 ] The second area draws on studies involving adults indicating that access to free health services, especially for populations like AMSM, who do not have independent access to health insurance, may be a primary motivator for research participation. [ 20 , 45 , 47 – 49 ] Our questions in this area also reflect ethics scholarship raising issues regarding the due and undue influences of such services.…”

Community engagement of adolescents in the development of a patient-centered outcome tool for adolescents with a history of hypospadias repair

“…There is limited evidence regarding adolescents' preferences for communication with healthcare providers and researchers about sensitive topics although distrust of medical professionals is commonly reported. [13,14] Most qualitative studies about adolescent sexuality have focused on attitudes, knowledge and choices regarding sexual and reproductive health. [15,16] Lee et al found that 20% of teens believed that their clinician would inform their parents if they disclosed that they were having sex.…”