Transgender and gender-nonconforming (TGNC) youth who suffer from gender dysphoria are at a substantially elevated risk of numerous adverse physical and psychosocial outcomes compared with their cisgender peers. Innovative treatment options used to support and affirm an individual’s preferred gender identity can help resolve gender dysphoria and avoid many negative sequelae of nontreatment. Yet, despite advances in these relatively novel treatment options, which appear to be highly effective in addressing gender dysphoria and mitigating associated adverse outcomes, ethical challenges abound in ensuring that young patients receive appropriate, safe, affordable treatment and that access to this treatment is fair and equitable. Ethical considerations in gender-affirming care for TGNC youth span concerns about meeting the obligations to maximize treatment benefit to patients (beneficence), minimizing harm (nonmaleficence), supporting autonomy for pediatric patients during a time of rapid development, and addressing justice, including equitable access to care for TGNC youth. Moreover, although available data describing the use of gender-affirming treatment options are encouraging, and the risks of not treating TGNC youth with gender dysphoria are evident, little is known about the long-term effects of both hormonal and surgical interventions in this population. To support ethical decision-making about treatment options, we encourage the development of a comprehensive registry in the United States to track long-term patient outcomes. In the meantime, providers who work with TGNC youth and their families should endeavor to offer ethically sound, patient-centered, gender-affirming care based on the best currently available evidence.
Skip Nav Destination
Article navigation
December 2018
State-of-the-Art Review Article|
December 01 2018
Ethical Issues in Gender-Affirming Care for Youth
Laura L. Kimberly, MSW;
Laura L. Kimberly, MSW
aDivision of Medical Ethics, Department of Population Health,
bHansjörg Wyss Department of Plastic Surgery, and
Search for other works by this author on:
Kelly McBride Folkers, MA;
Kelly McBride Folkers, MA
aDivision of Medical Ethics, Department of Population Health,
Search for other works by this author on:
Phoebe Friesen, PhD;
Phoebe Friesen, PhD
cEthox Centre, Nuffield Department of Population Health, University of Oxford, Oxford, United Kingdom; and
Search for other works by this author on:
Darren Sultan, BA;
Darren Sultan, BA
bHansjörg Wyss Department of Plastic Surgery, and
Search for other works by this author on:
Gwendolyn P. Quinn, PhD;
Gwendolyn P. Quinn, PhD
aDivision of Medical Ethics, Department of Population Health,
dDepartments of Obstetrics and Gynecology,
Search for other works by this author on:
Alison Bateman-House, PhD;
Alison Bateman-House, PhD
aDivision of Medical Ethics, Department of Population Health,
Search for other works by this author on:
Brendan Parent, JD;
Brendan Parent, JD
aDivision of Medical Ethics, Department of Population Health,
Search for other works by this author on:
Craig Konnoth, JD;
Craig Konnoth, JD
eColorado Law, University of Colorado, Boulder, Colorado
Search for other works by this author on:
Aron Janssen, MD;
Aron Janssen, MD
fChild and Adolescent Psychiatry, and
Search for other works by this author on:
Lesha D. Shah, MD;
Lesha D. Shah, MD
fChild and Adolescent Psychiatry, and
Search for other works by this author on:
Rachel Bluebond-Langner, MD;
Rachel Bluebond-Langner, MD
bHansjörg Wyss Department of Plastic Surgery, and
Search for other works by this author on:
Caroline Salas-Humara, MD
gPediatrics, New York University School of Medicine, New York, New York;
Address correspondence to Caroline Salas-Humara, MD, Department of Pediatrics, New York University School of Medicine, 462 First Ave, Room A316, New York, NY 10016. E-mail: [email protected]
Search for other works by this author on:
Address correspondence to Caroline Salas-Humara, MD, Department of Pediatrics, New York University School of Medicine, 462 First Ave, Room A316, New York, NY 10016. E-mail: [email protected]
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
Pediatrics (2018) 142 (6): e20181537.
Article history
Accepted:
August 08 2018
Citation
Laura L. Kimberly, Kelly McBride Folkers, Phoebe Friesen, Darren Sultan, Gwendolyn P. Quinn, Alison Bateman-House, Brendan Parent, Craig Konnoth, Aron Janssen, Lesha D. Shah, Rachel Bluebond-Langner, Caroline Salas-Humara; Ethical Issues in Gender-Affirming Care for Youth. Pediatrics December 2018; 142 (6): e20181537. 10.1542/peds.2018-1537
Download citation file:
Sign in
Don't already have an account? Register
Purchased this content as a guest? Enter your email address to restore access.
Please enter valid email address.
Pay-Per-View Access
$35.00
Citing articles via
Email alerts
Comments
The dangers of a trans youth registry
In their article, Laura L. Kimberly et al. recommend the creation of a comprehensive outcomes registry for trans youth in order to collect data used to address various clinical concerns posed by gender-affirming care. The publication comes only a few days after a recent publication by de Graaf, Carmichael, Steensma and Zucker1 created outrage for suggesting a similar registry on a global level.2
The authors proposal is worrisome, especially within the current volatile political context of the United States. A national registry for trans youth raises serious privacy concerns and could have disastrous consequences for trans communities. Proposing such a registry without a thorough community-led analysis of its potential effects is reckless.
Data anonymization is far from perfect and can be re-identified even in large data sets.3 Registry data could easily be de-aggregated and be used to uniquely identify children by relatively unsophisticated actors. Furthermore, judges and governmental actors could potentially force re-identification and or access to raw data.4
Trans healthcare brings into tension the necessity of scientific evidence and the risks of institutional and governmental surveillance. The work of Dean Spade (2015) has shed light on the dangers of widespread collection of gender information—a risk that is even greater in the case of a registry of trans youth. We should heed his warning.
The establishment of registries is also a loaded political matter. The Trump administration is currently attacking trans rights from various ends. By proposing a Muslim registry in 2016, his administration has shown willingness to use data sets for ill purposes. Registries call our communities back to violent eugenicist pasts, pasts which are beginning to look like our future, too. Although I have no doubts about the good intentions of the authors, their proposal risks giving anti-trans movements ammunition and awaken our collective trauma.
While I applaud the authors’ interest in the needs of trans youth and recognise the importance of better outcomes information, I cannot commend their article’s dearth of ethical and political analysis of trans youth registries. I hope that in the future, researchers will not put forward suggestions of this kind so nonchalantly. At a minimum, any proposed registry should be preceded by large-scale community consultation, be authored in collaboration with trans scholars and stakeholders, include a risk assessment, and propose safeguards against re-identification.
References:
1. de Graaf NM, Carmichael P, Steensma TD, Zucker KJ. Evidence for a Change in the Sex Ratio of Children Referred for Gender Dysphoria: Data From the Gender Identity Development Service in London (2000-2017). The Journal of Sexual Medicine. 2018;15(10):1381-1383.
2. Dillon B. Outrage Over Suggestion Of Global Registry For Trans Children. gcn. 6 November 2018.
3. Ohm P. Broken Promises of Privacy: Responding to the Surprising Failure of Anonymization. UCLA Law Review. 2010; 57:1701-1777.
4. Centre de lutte contre l'oppression des genres (Centre for Gender Advocacy) c. Québec (Procureure générale), 2016 QCCS 5161
5. Spade D. Normal Life: Administrative Violence, Critical Trans Politics, and the Limits of Law. rev. ed. Durham & London: Duke University Press; 2015.
A Dangerous Proposal: Against a Registry of Trans Youth
In “Ethical Issues in Gender-Affirming Care for Youth”, Laura L. Kimberly et al. conclude by recommending the creation of a comprehensive outcomes registry for trans youth in order to collect data used to address various clinical concerns posed by gender-affirming care (p. 2). The publication, which appeared on November 6th in ahead-of-print form, comes only a few days after a recent publication by de Graaf, Carmichael, Steensma and Zucker (2018) created outrage for suggesting a similar registry on a global level (Dillon, 2018).
The authors proposal is worrisome, especially within the current volatile political context of the United States. A national registry for trans youth would be a gross breach of privacy and could lead to disastrous consequences for trans children and teenagers. To propose such a registry without a thorough, careful, and community-led analysis of its ramifications is reckless.
Although proponents of registries have dismissed fears that they could be used maliciously by pointing to anonymization and parental consent (Dillon, 2018), it should be recognised that data involving trans communities can easily be de-aggregated and used to identify individuals. Even in the context of larger communities, data has been de-anonymized on various occasions (Ohm, 2010). De-aggregated data can be used to uniquely identify trans children by relatively unsophisticated individuals and the availability of this data is often put in the hands of judges, as was evidenced in the 2016 court case Centre for Gender Advocacy c. Québec. In that case, a judge rejected the government’s request for the raw data of the TransPULSE study in Ontario. In another jurisdiction, or with a more conservative judge, perhaps the outcome would have gone another way.
A personal experience I had can perhaps exemplify just how easy re-identification of data can be. A few years ago, I wrote an article in which I disclosed that I was a transfeminine individual living in Quebec. This article was submitted to a law journal. Despite this being my first publication and despite the fact that little identifying information was written in the text, one of the peer-reviewers later revealed having identified me from the combination of facts: transfeminine, doing law, in Quebec. Three little pieces of information were sufficient for de-identification. In rural areas, even less information may suffice to uniquely identify trans youth.
Research on trans people brings into tension the need for data which better meets trans people’s needs and the impetus to undermine rather than bolster surveillance apparatuses of the state. The work of Dean Spade (2015) and Paisley Currah and Tara Mulqueen (2011), to name but three scholars, have shed light on the dangers of widespread collection of gender information—a risk that is even greater in the case of a registry of trans youth.
Calls for the establishment of registries are also politically loaded. Trans communities are currently under attack by the Trump administration, and the same government has previously called for the creation of a Muslim registry. There is collective trauma in population control measures, and registries are strongly associated with eugenicist and dehumanising rhetoric. Although I am certain that the authors had no intention to provide ammunition to anti-trans movements or recall trans communities to their fears of governmental violence, their proposal risks such an effect.
While I applaud the authors’ interest in the needs of trans youth and recognise the importance of better outcomes information, I cannot commend their article’s lack of a thorough ethical analysis of the privacy and informed consent issues at stake with their proposed national registry. In the future, I do hope that proposals of this kind will not be made so nonchalantly, without large scale community consultations, a thorough ethical analysis of the dangers of registries, and considerations for how a registry could guarantee the anonymity of its subjects.
References:
Centre de lutte contre l'oppression des genres (Centre for Gender Advocacy) c. Québec (Procureure générale), 2016 QCCS 5161. http://canlii.ca/t/gvcpw
Currah P, Mulqueen T. Identity, Biometrics, and Transgender Bodies at the Airport. Social Research. 2011;78(2):557-6582
de Graaf NM, Carmichael P, Steensma TD, Zucker KJ. Evidence for a Change in the Sex Ratio of Children Referred for Gender Dysphoria: Data From the Gender Identity Development Service in London (2000-2017). The Journal of Sexual Medicine. 2018;15(10):1381-1383. https://doi.org/10.1016/j.jsxm.2018.08.002
Dillon B. Outrage Over Suggestion Of Global Registry For Trans Children. gcn. 6 November 2018. https://gcn.ie/outrage-suggestion-global-registry-trans-kids/
Ohm P. Broken Promises of Privacy: Responding to the Surprising Failure of Anonymization. UCLA Law Review. 2010; 57:1701-1777.
Spade D. Normal Life: Administrative Violence, Critical Trans Politics, and the Limits of Law. rev. ed. Durham & London: Duke University Press; 2015.