PURPOSE: The purpose was to examine whether a requirement for parental or guardian consent systematically limits which lesbian, gay, bisexual, trans, two-spirit, queer/questioning (LGBT2Q+) youth participate in research.
METHODS: A total of 60 LGBT2Q+ youth (aged 14-18 years) completed measures assessing gender and sexual minority identity, depression and anxiety, help-seeking intentions, and social support.
RESULTS: A substantial proportion (37.6%) of youth reported that they would not have participated in the research if parental or guardian consent was required. Those who would not have participated had more negative attitudes about their sexual and gender identity, less family support, lower levels of help-seeking intentions, and higher levels of negative affect.
CONCLUSIONS: The results suggest that requiring parental or guardian consent may exclude the most at-risk youth. Policy and practice decisions regarding the health and mental health outcomes of LGBT2Q+ youth might be based on incomplete and unrepresentative data

Cadieux, Courtney

Crooks, Claire V

Cwinn, Eli

English

Scholarship@Western

Western University Scholarship@Western Education Publications Education Faculty 10-12-2020 Who Are We Missing? The Impact of Requiring Parental or Guardian Consent on Research With Lesbian, Gay, Bisexual, Trans, Two-Spirit, Queer/Questioning Youth. Eli Cwinn Courtney Cadieux Claire V Crooks Follow this and additional works at: https://ir.lib.uwo.ca/edupub  Part of the Developmental Psychology Commons, Education Commons, Health Psychology Commons, Quantitative Psychology Commons, School Psychology Commons, and the Social Justice Commons Citation of this paper: Cwinn, E., Cadieux, C., & Crooks, C. V. (2020). Who are we missing? The impact of requiring parental or guardian consent on research with lesbian, gay, bisexual, trans, two-spirit, queer/questioning youth. Journal of Adolescent Health. Adolescent health briefWho Are We Missing? The Impact of Requiring Parental orGuardian Consent on Research With Lesbian, Gay, Bisexual, Trans,Two-Spirit, Queer/Questioning YouthEli Cwinn, Ph.D., Courtney Cadieux, M.A., and Claire V. Crooks, Ph.D. *Centre for School Mental Health, University of Western Ontario, London, Ontario, CanadaArticle history: Received April 23, 2020; Accepted July 23, 2020Keywords: LGBT; Gender, sexuality, and romantic minorities; Consent; Human rights, ethics; Methods; Program evaluation andplanning; Ethics review boardsA B S T R A C TPurpose: The purpose was to examine whether a requirement for parental or guardian consentsystematically limits which lesbian, gay, bisexual, trans, two-spirit, queer/questioning (LGBT2Qþ)youth participate in research.Methods: A total of 60 LGBT2Qþ youth (aged 14e18 years) completed measures assessing genderand sexual minority identity, depression and anxiety, help-seeking intentions, and social support.Results: A substantial proportion (37.6%) of youth reported that they would not have participatedin the research if parental or guardian consent was required. Those who would not have partici-pated had more negative attitudes about their sexual and gender identity, less family support,lower levels of help-seeking intentions, and higher levels of negative affect.Conclusions: The results suggest that requiring parental or guardian consent may exclude themost at-risk youth. Policy and practice decisions regarding the health and mental health outcomesof LGBT2Qþ youth might be based on incomplete and unrepresentative data. 2020 Society for Adolescent Health and Medicine. Published by Elsevier Inc. This is an openaccess article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).IMPLICATIONS ANDCONTRIBUTIONThe results of this briefreport suggest thatrequiring guardian con-sent may exclude the mostvulnerable lesbian, gay,bisexual, trans, two-spirit,queer/questioning youth.IRBs should carefullyweigh the trade-offs be-tween requiring guardianconsent when researchinghealth and mental healthoutcomes with lesbian,gay, bisexual, trans, two-spirit, queer/questioningyouth.There is a need for ongoing research on the health trajectoriesfor lesbian, gay, bisexual, trans, two-spirit, queer/questioning(LGBT2Qþ) youth. These youth face well-documented healthdisparities compared with their heterosexual and cisgenderpeers in areas such as mental health, problematic substance use,and sexual health [1e3]. There is a paucity of research involvingLBGT2Qþ youth aged <18 years, which hampers prevention andintervention efforts andmay lead to biased conclusions [4]. Muchof the existing research is retrospective, and results may beinfluenced by recall bias, may not reflect the changing socialculture, and may not take into consideration the developmentalchanges that occur around the age of 18 years [4]. Non-retro-spective research involving youth often requires guardian con-sent to protect youth from undue harm. In Canada, InstitutionalReview Boards (IRBs) typically require guardian consent forresearch with youth aged <16 years (if community based) or 18years (if school based).However, requiring parental consent as a matter-of-coursemay be inappropriate. National ethics standards in Canada noteConflicts of interest: There are no conflicts of interest for any of the authors.* Address correspondence to: Claire V. Crooks, Ph.D., Centre for School MentalHealth, University of Western Ontario, 1137 Western Road, Room 1154, London,ON N6G 1G7, Canada.E-mail address: ccrooks@uwo.ca (C.V. Crooks).www.jahonline.org1054-139X/ 2020 Society for Adolescent Health and Medicine. Published by Elsevier Inc. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).https://doi.org/10.1016/j.jadohealth.2020.07.037Journal of Adolescent Health xxx (2020) 1e3that decisions regarding consent ought to be determined by theperson’s decision-making capacity rather than age [5], and thedefault requirement of guardian consent by IRBs does not sup-port young people’s agency and may also undermine their dig-nity and integrity. Empowering research participants andtreating them with dignity is a principal purpose of the researchconsent process [6]. Furthermore, the rigorous consent processrequired by many IRBs may be overly conservative in the contextof social science research. Whereas the traditional requirementsfor parental consent make sense in health research where thereis a risk of serious bodily harm, the risk of harm stemming fromthe completion of questionnaires, interviews, and focus groups isrelatively small [6].Moreover, there are serious ethical and practical concernsthat stem from the requirement of guardian consent in LGBT2Qþpopulations, such as systematically excluding an importantsubsect of LGBTQ2þ youth, placing youth at risk, and formingbiased conclusions regarding policy and practice. LGBT2Qþyouth with the most rejecting families are at increased risk forhomelessness or precarious living arrangements and would nothave access to guardian consent to participate in research [7]. Tocope with homelessness and the severe mental and physicalhealth challenges involved in living in the streets [8], LGBT2Qþyouth may have unofficial living arrangements with friends orsiblings [9] and would not have access to guardian consent toparticipate in research. The requirement of guardian consentmay increase the risk for youth who have not disclosed theirsexual orientation and/or gender identity to their guardians orsimply dissuade youth from participating in research [4].Importantly, the requirement for guardian consent might lead toa biased sampling procedure that leads us to make policy andpractice decisions based on data from unrepresentative samples.The purpose was to examine whether a requirement forguardian consent systematically limits which LGBT2Qþ youthparticipate in research.MethodsParticipants were (n ¼ 60) youth aged 14e18 years who wereinvolved with a Genders and Sexualities Alliance/Gay-StraightAllianceat their school or from a community support center forLGBT2Qþ persons in Ontario, Canada. Although school districtstypically require guardian consent for research participationwith their students, our partners in this study waived therequirement of guardian consent because theywere interested inthe research question at hand and because they wanted to pro-vide all LGBTQ2þ youth an opportunity to participate. All pro-cedures were approved by Western University’s Non-MedicalResearch Ethics Board.As part of a larger study, participants answered an item aboutwhether they would have participated if guardian consent wasrequired and then completed the Lesbian, Gay, Bisexual IdentityScale [10], which demonstrates a three-factor structure inadolescent samples (positive identity, identity exploration, andnegative identity; Cwinn, Daly & Crooks, in preparation), theGeneral Help-Seeking Questionnaire [11], the MultidimensionalScale of Perceived Social Support [12], and the Depression,Anxiety, Stress Scale-21 [13]. All scales used have adequate in-ternal consistency and validity [10,11,14,15].We explored demographic differences between youth whowould participate regardless of the requirement of guardianconsent and those whowould not participate if guardian consentwas required. A series of independent samples t tests was con-ducted across several variables and the consent groups todetermine differences.ResultsAs seen in Table 1, youth who are white, older, and eithercisgender or living in their felt gender “all the time” were morelikely to participate regardless of guardian consent was required.As seen in Table 2, adolescents who would not participate ifconsent were required had more negative attitudes toward theirLGBT2Qþ identity (t(55) ¼ 4.94; p < .001), less family support(t(55) ¼ 3.35; p< .01), and more anxiety (t(55) ¼ 2.13; p < .05).There was also a nonsignificant trend indicating that non-consenting youth expressed lower levels of help-seeking in-tentions (adjusted t(31.35) ¼ 1.95; p < .1) and higher levels ofnegative affect (t(55) ¼ 1.91; p < .1).DiscussionSummary and conclusionThe results of this study demonstrate that a substantial pro-portion of LBGT2Qþ youth would not participate in researchrequiring guardian consent, and these youths are among themost vulnerable. These findings have serious ethical and prac-tical implications. The Canadian Tri-Council Policy on ResearchEthics states that researchers have a responsibility to obtain in-formation about all types of people impacted by a problem area,even if it is difficult to recruit them [5]. According to the UNConvention on the Rights of the Child, youth have the funda-mental right to have their voices heard on matters that concernthem [16]. Other researchers have noted that IRBs can be pater-nalistic [17] and may overestimate youths’ need for protectionand underestimate their abilities as autonomous decision-makers [18]. By requiring guardian consent, IRBs may inadver-tently be silencing an important subset of LGBT2Qþ youth.Practically, excluding these youth means that we are obtaining aTable 1Demographic characteristics for each consent groupYes, I would stillparticipateNo, I would nothaveparticipatedan % n %Overall 36 60 22 36.7Age (years)14e15 11 50 11 5016e18 25 69.4 11 30.6EthnicityWhite 16 69.6 7 30.4Visible minority 20 57.1 15 42.9Gender identityCisgender 24 66.7 12 33.3Gender minorityb 12 54.5 10 45.5Living in felt genderYesdall of the time 28 66.7 14 33.3Yesdsome of the time 7 53.8 6 46.2No 1 33.3 2 66.7a Two participants (3.3%) did not answer the consent question resulting in<100% for row percentages; all percentages reported are row percentages.b Our sample self-identifies by several gender identities including transgender,gender fluid, nonbinary, two-spirited, and otherenot defined.E. Cwinn et al. / Journal of Adolescent Health xxx (2020) 1e32biased picture of the types of risks, needs, and interventionoutcomes when working with LGBT2Qþ youth.Some alternatives to requiring parental consent would be toexplain the study and provide the consent form in advance andencourage the youth to ask a trusted adult for guidance, clearlyexplaining and normalizing that many youth choose not toparticipate and explaining the reasons why some youth wouldnot want to participate and ensuring adequate training for con-sent procedures with community partners as well as researchers.It is acknowledged that some parents may feel betrayed or angrythat they were not consulted for research if they discovered theirchild’s research participation in the future. This harm could bemitigated by agencies having information letters sent to parentsexplaining the types of research where consent would be gath-ered, and those where consent would not be required andensuring that there is a well-trained researcher whom guardianscan contact if they have questions. More research is needed onthe actual risks and benefits of youth participation in suchresearch, as well as the advantages and disadvantages of some ofthe proposed alternatives, to help IRBs and research partners(such as school districts) make data-based decisions about con-sent requirements.AcknowledgmentsThe authors would like to thank the youthwho participated inthe study. The authors would also like to acknowledge Brad Daly,Maisha Syeda, and Alicia Lapointe for providing feedback onearlier drafts of this report.Funding SourcesThis study was supported by the Public Health Agency ofCanada through a grant to C.C. (Grant# 1819-HQ-000052).References[1] Lowry R, Johns MM, Gordon AR, et al. Nonconforming gender expressionand associated mental distress and substance use among high school stu-dents. JAMA Pediatr 2018;172:1020e8.[2] Russell ST, Fish JN. Mental health in lesbian, gay, bisexual, and transgender(LGBT) youth. Annu Rev Clin Psychol 2016;12:465e87.[3] Fine M, Stoudt BG, Fox M, et al. The uneven distribution of social suffering:Documenting the social health consequences of neo-liberal social policy onmarginalized youth. Eur Health Psychol 2010;12:30e5.[4] Mustanski B. Ethical and regulatory issues with conducting sexualityresearch with LGBT adolescents: A call to action for a scientificallyinformed approach. Arch Sex Behav 2011;40:673e86.[5] Tri-Council Policy statement: Ethical conduct for research involvinghumans e TCPS 2. 2018. Available at: https://ethics.gc.ca/eng/policy-politique_tcps2-eptc2_2018.html. Accessed June 10, 2020.[6] Taylor CG. Counterproductive effects of parental consent in researchinvolving LGBTTIQ youth: International research ethics and a study of atransgender and two-spirit community in Canada. J LGBT Youth 2008;5:34e56.[7] Durso LE, Gates GJ, Org E. UCLA other recent work title serving our youth:Findings from a National Survey of Services Providers working withlesbian, gay, bisexual and transgender youth who are homeless or at risk ofbecoming homeless permalink. Available at: https://escholarship.org/uc/item/80x.2012. Accessed April 10, 2020.[8] Edidin JP, Ganim Z, Hunter SJ, et al. The mental and physical health ofhomeless youth: A literature review. Child Psychiatry Hum Dev 2012;43:354e75.[9] Curry SR, Morton M, Matjasko JL, et al. Youth homelessness and vulner-ability: How does couch surfing fit? Am J Community Psychol 2017;60:17e24.[10] Mohr JJ, Kendra MS. Revision and extension of a multidimensional measureof sexual minority identity: The lesbian, gay, and bisexual identity scale.J Couns Psychol 2011;58:234e45.[11] Wilson C, Deane F, Ciarrochi J, et al. Measuring help seeking intentions:Properties of the general help seeking questionnaire. Can J Couns 2005;39:15e28.[12] Zimet GD, Dahlem NW, Zimet SG, et al. The multidimensional scale ofperceived social support. J Pers Assess 1988;52:30e41.[13] Lovibond SH, Lovibond PF. Manual for the depression anxiety stress scales(2nd edition). 2nd ed. Sydney, N.S.W.: Psychology Foundation of Australia;1995.[14] Akhtar A, Rahman A, Husain M, et al. Multidimensional scale of perceivedsocial support: Psychometric properties in a South Asian population.J Obstet Gynaecol Res 2010;36:845e51.[15] Norton PJ. Depression anxiety and stress scales (DASS-21): Psychometricanalysis across four racial groups. Anxiety Stress Coping 2007;20:253e65.[16] Assembly UN General. Convention on the rights of the child. United Na-tions. Treaty Series 1989;1577:3.[17] Swauger M. No kids allowed!!!: How IRB ethics undermine qualitativeresearchers from achieving socially responsible ethical standards. RaceGender Class 2009;16:63e81.[18] Wagener DK, Sporer AK, Simmerling M, et al. Human participants chal-lenges in youth-focused research: Perspectives and practices of IRB ad-ministrators. Ethics Behav 2004;14:335e49.Table 2Differences in attitudes, support, help-seeking intentions, and distress betweenconsenting and nonconsenting youthT score df Yes, I wouldparticipateNo, I would notparticipateM (SD) M (SD)Negative identityattitude4.94*** 55 14.14 (4.85) 21.67 (6.58)Positive identityattitude.63ns 55 36.19 (7.19) 35.05 (7.54)Identity uncertainty 1.36ns 54 10.28 (3.83) 11.00 (5.21)Help-seekingintentions1.95þa 31.35 24.17 (4.08) 21.33 (5.89)Family support 3.35** 55 18.69 (6.13) 12.76 (6.99)DASS total 1.91þ 55 55.64 (16.70) 63.71 (14.51)DASS depression 1.45ns 55 19.28 (6.92) 21.95 (6.37)DASS anxiety 2.13* 55 17.72 (6.23) 21.19 (5.34)DASS stress 1.47ns 55 18.64 (5.95) 20.57 (4.75)DASS ¼ Depression Anxiety and Stress Scales; M ¼ mean; SD ¼ standard devi-ation.*** <.001, **<.01, *<.05, þ nonsignificant trend <.1.a The assumption of equal variances is not met, and the adjusted T-score isreported.E. Cwinn et al. / Journal of Adolescent Health xxx (2020) 1e3 3

Who Are We Missing? The Impact of Requiring Parental or Guardian Consent on Research With Lesbian, Gay, Bisexual, Trans, Two-Spirit, Queer/Questioning Youth.

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Who Are We Missing? The Impact of Requiring Parental or Guardian Consent on Research With Lesbian, Gay, Bisexual, Trans, Two-Spirit, Queer/Questioning Youth.

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