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Early Medical Treatment of Children and Adolescents With Gender Dysphoria: An Empirical Ethical Study

Authors:
  • Amsterdam UMC
  • Amsterdam University Medical Centers

Abstract and Figures

The Endocrine Society and the World Professional Association for Transgender Health published guidelines for the treatment of adolescents with gender dysphoria (GD). The guidelines recommend the use of gonadotropin-releasing hormone agonists in adolescence to suppress puberty. However, in actual practice, no consensus exists whether to use these early medical interventions. The aim of this study was to explicate the considerations of proponents and opponents of puberty suppression in GD to move forward the ethical debate. Qualitative study (semi-structured interviews and open-ended questionnaires) to identify considerations of proponents and opponents of early treatment (pediatric endocrinologists, psychologists, psychiatrists, ethicists) of 17 treatment teams worldwide. Seven themes give rise to different, and even opposing, views on treatment: (1) the (non-)availability of an explanatory model for GD; (2) the nature of GD (normal variation, social construct or [mental] illness); (3) the role of physiological puberty in developing gender identity; (4) the role of comorbidity; (5) possible physical or psychological effects of (refraining from) early medical interventions; (6) child competence and decision making authority; and (7) the role of social context how GD is perceived. Strikingly, the guidelines are debated both for being too liberal and for being too limiting. Nevertheless, many treatment teams using the guidelines are exploring the possibility of lowering the current age limits. As long as debate remains on these seven themes and only limited long-term data are available, there will be no consensus on treatment. Therefore, more systematic interdisciplinary and (worldwide) multicenter research is required. Copyright © 2015 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.
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Original article
Early Medical Treatment of Children and Adolescents With
Gender Dysphoria: An Empirical Ethical Study
Lieke Josephina Jeanne Johanna Vrouenraets, M.Sc.
a
,
*
, A. Miranda Fredriks, M.D., Ph.D.
a
,
Sabine E. Hannema, M.D., Ph.D.
b
, Peggy T. Cohen-Kettenis, Ph.D.
c
, and
Martine C. de Vries, M.D., Ph.D.
b
a
Department of Pediatric and Adolescent Psychiatry, Curium-Leiden University Medical Centre, Oegstgeest, The Netherlands
b
Department of Pediatrics, Leiden University Medical Centre, Leiden, The Netherlands
c
Department of Medical Psychology, VU University Medical Centre, Amsterdam, The Netherlands
Article history: Received January 12, 2015; Accepted April 8, 2015
Keywords: Gender dysphoria; Puberty suppression; Adolescents; Ethics; Qualitative study; Interviews; Questionnaires; Worldwide
ABSTRACT
Purpose: The Endocrine Society and the World Professional Association for Transgender Health
published guidelines for the treatment of adolescents with gender dysphoria (GD). The guidelines
recommend the use of gonadotropin-releasing hormone agonists in adolescence to suppress
puberty. However, in actual practice, no consensus exists whether to use these early medical
interventions. The aim of this study was to explicate the considerations of proponents and
opponents of puberty suppression in GD to move forward the ethical debate.
Methods: Qualitative study (semi-structured interviews and open-ended questionnaires) to
identify considerations of proponents and opponents of early treatment (pediatric endocrinolo-
gists, psychologists, psychiatrists, ethicists) of 17 treatment teams worldwide.
Results: Seven themes give rise to different, and even opposing, views on treatment: (1) the (non-)
availability of an explanatory model for GD; (2) the nature of GD (normal variation, social construct
or [mental] illness); (3) the role of physiological puberty in developing gender identity; (4) the role
of comorbidity; (5) possible physical or psychological effects of (refraining from) early medical
interventions; (6) child competence and decision making authority; and (7) the role of social
context how GD is perceived. Strikingly, the guidelines are debated both for being too liberal and
for being too limiting. Nevertheless, many treatment teams using the guidelines are exploring the
possibility of lowering the current age limits.
Conclusions: As long as debate remains on these seven themes and only limited long-term data
are available, there will be no consensus on treatment. Therefore, more systematic interdisci-
plinary and (worldwide) multicenter research is required.
Ó2015 Society for Adolescent Health and Medicine. All rights reserved.
IMPLICATIONS AND
CONTRIBUTION
This study shows large dif-
ferences in the moral eval-
uation of using puberty
suppression in children
and adolescents with
gender dysphoria. Current
policies are predominantly
expert opinion based
because only limited long-
term data are available.
Nevertheless, increasing
numbers of treatment
teams embrace early treat-
ment and explore lowering
age limits.
Gender dysphoria (GD) is a condition in which individuals
experience their gender identity (the psychological experience of
oneself as male, female, or otherwise) as being incongruent with
their phenotype (the external sex characteristics of their body)
[1]. The most extreme form of GD, often called transsexualism, is
accompanied by a strong wish for gender reassignment [2].Of
the individuals experiencing GD, a small number is children.
Conicts of Interest: There are no potential conicts, real and perceives, for all
named authors.
*Address correspondence to: Lieke Josephina Jeanne Johanna Vrouenraets,
M.Sc., Department of Pediatric and Adolescent Psychiatry, Curium-Leiden Uni-
versity Medical Centre, Endegeesterstraatweg 27, 2342 AK Oegstgeest, The
Netherlands.
E-mail address: L.J.J.J.Vrouenraets@curium.nl (L.J.J.J. Vrouenraets).
www.jahonline.org
1054-139X/Ó2015 Society for Adolescent Health and Medicine. All rights reserved.
http://dx.doi.org/10.1016/j.jadohealth.2015.04.004
Journal of Adolescent Health xxx (2015) 1e7
Only in a minority of prepubertal children, GD will persist and
manifest as an adolescent/adult GD. The percentage of per-
sistersappears to be between 10% and 27% [3e5]. Treatment for
prepubertal children therefore is predominantly psychological.
However, those children who still experience GD when entering
puberty, almost invariably will become gender dysphoric adults
[6]. These young adolescents may demand hormonal in-
terventions such as puberty blockers (gonadotropin-releasing
hormone agonists) to suppress the development of secondary
sex characteristics. In recent years, the possibility of puberty
suppression has generated a new but controversial dimension to
the clinical management of adolescents with GD. The purpose of
puberty suppression is to relieve suffering caused by the devel-
opment of secondary sex characteristics, to provide time to make
a balanced decision regarding the actual gender reassignment
(by means of cross-sex hormones and surgery) and to make
passing in the new gender role easier [7]. In the Netherlands,
puberty suppression is part of the treatment protocol and as a
rule possible in adolescents aged 12 years and older who are past
the early stages of puberty and still suffer from persisting GD.
When there are good reasons to treat an adolescent before the
age of 12 years, for example, because of the height of the
adolescent, treatment at a slightly younger age is acceptable.
Although an increasing number of gender clinics have adop-
ted this Dutch strategy and international guidelines exist in
which puberty suppression is mentioned as a treatment option
[8,9], many professionals working with gender dysphoric youth
remain critical [10,11]. Concerns have been raised about the risk
of making the wrong treatment decisions and the potential
adverse effects on health and on psychological and psychosexual
functioning. Proponents of puberty suppression, on the other
hand, emphasize the benecial effects of puberty suppression on
the adolescentsmental health, quality of life, and of having a
physical appearance that makes it possible to live unobtrusively
in the desired gender role [12].
Strikingly, in this debate, proponents and opponents of
puberty suppression use the same ethical principles (autonomy,
benecence, nonmalecence) but interpret them in totally
different ways. Ethical discussions are often held on the level of
these ethical principles only, with moral intuitions moving
between extremes; for example, puberty suppression as a
blessing versus treatment as an evident danger or a denite
competence of the child versus incompetence because the child
is simply too young and has an immature developmental level to
decide on these substantial issues. What is missing in the dis-
cussions is an exploration of underlying ideas and theories about
the nature of gender (dichotome or uid) and GD (mental illness
or social construct), child welfare, and child competence. Pro-
ponents and opponents seem to have different views on these
issues, often without openly stating them. It is an essential task to
elucidate these underlying ideas and theories because they
substantially inuence the judgment on GD treatment.
Strikingly, in the literature on GD, most of the times, only
proponents give arguments for their treatment position. It is
difcult to nd arguments against the use of puberty suppression
as a treatment option as opponents rarely publish in professional
journals. Therefore, to date there is no clear overview of the
considerations of proponents and opponents regarding the use
of early medical interventions in GD. An overview explicating
considerations, which underlie the different views on puberty
suppression, could be the rst step toward a more consistent
approach recommended by health care professionals across
different countries. The aim of our study was to explicate the
considerations of proponents and opponents of puberty sup-
pression to move forward the ethical debate.
For this purpose, we have performed an empirical ethical
study to answer the following questions: (1) what are the moral
intuitions (direct thoughts or opinions) of informants on puberty
suppression in GD; (2) what are the (underlying) ideas,
assumptions, and theories of informants about the etiology of
GD, and the concepts gender,”“child competence,and best
interests?; and (3) do moral intuitions, ideas, and theories of
proponents of puberty suppression differ from those of oppo-
nents, and in what sense?
Methods
An empirical ethical approach was followed, using a qualita-
tive interview and questionnaire study. The study was approved
by the institutional review board of the Leiden University Med-
ical Centre.
Fifteen professionals participating in the study were inter-
viewed face-to-face, six by using Skype (Microsoft Corp., Redmond,
WA). Some treatment teams indicated that they did not master the
English language well enough for a direct interview. These teams
were offered similar questions in a questionnaire by e-mail. The
questionnaire was lled in by 15 professionals. The empirical data
were obtained between October 2013 and August 2014.
Initial interview topics were formulated after examination of
the relevant literature. In accordance with qualitative research
techniques, the interview topics evolved as the interviews pro-
gressed through an iterative process to ensure that the questions
captured all relevant emerging themes [13,14]. The interviews
contained general topics and no close ended questions.
The informants were child and adolescent psychiatrists, psy-
chologists, and endocrinologists from diverse treatment teams in
European andNorth American countries. Two Dutch ethicists, who
are not directly related to a treatment team, werealso interviewed.
The treatment teams were purposefully selected on the basis of
their stance in favor or against puberty suppression in the past.
Interestingly, at the time this study was initiated, puberty sup-
pression was not part of the treatment protocol for adolescents of
several treatment teams. However, during this study, puberty
suppression did become part of the treatment protocol of some of
these teams. When interviewing these teams, extra emphasis was
placed on the arguments they used to justify these treatment
changes. The 36 professionals who participated in this study
worked in 10 different countries (Figure 1).
An extensive description of the analysis of the data is given in
Appendix A, which can be found online.
Results
From the literature, interviews, and questionnaires, seven
themes emerged that lead to different, and sometimes even
opposing, views on the treatment of adolescents with GD.
Representative quotations were chosen to illustrate the themes
identied.
The availability or nonavailability of an explanatory model for
gender dysphoria
With regard tothe causes of GD, no single cause has been found
so far. In the literature, genetic, hormonal, neurodevelopmental,
L.J.J.J. Vrouenraets et al. / Journal of Adolescent Health xxx (2015) 1e72
and psychosocial factorshave been suggested to play a role [15,16].
Most of our informants believe that a single cause is unlikely, but
they see GD as inuenced by diverse factors. Some put forwardthe
possibility of a (slightly) different etiology for different subtypes.
Others think that biological, for example, neurodevelopmental,
factors play a dominant role and believe that psychofamilial
factors have very little or no inuence. Altered hormone exposure
during fetal development was also suggested as a potential cause.
I think that nature and nurture both contribute to the
development and expression of gender dysphoria. The role of
each is different in each individual and this explains the
heterogeneity of gender dysphoria expression.
-Endocrinologist
I believe biological factors play the predominant role. In my
work, I have not found psycho familial or social factors that
children and adolescents with gender dysphoria have in
common, which is also known in scientic literature.
-Psychologist
We asked the informants whether an explanatory model for
GD would affect ideas regarding treatment options of adoles-
cents. Many, including some informants who are skeptical about
early medical treatment in GD, stated that the etiology does not
affect the way adolescents with GD should be treated. Further-
more, most respondents think that not knowing the etiology
should not prevent providing care and understanding of the
persons predicament.
One respondent compared it to having a broken leg:
[It is possible to] understand that it is painful and impairs
function even if you do not know exactly why or how that
person has broken his leg.
-Psychiatrist
The nature of gender dysphoria
Is GD a normal variation of gender expression, a social
construct, a medical disease, or a mental illness? In the DSM-5
[17] and the to-be-released ICD-11 [18], the main challenge in
classifying GD has been to nd a balance between concerns
related to the stigmatization of mental disorders and the need for
diagnostic categories that facilitate access to health care, pay-
ment by insurance companies, and the communication between
diverse professions [19].
I think the focus should be on getting rid of the stigma that
accompanies psychiatric disorders instead of on saving spe-
cic disorders from the psychiatric disorder group.
-Psychiatrist
According to the literature, some authorities classify GD as a
mental illness [20,21], whereas various scholars state that the
diagnosis of gender-variant children with GD is a prime example
of a conict between the individual and the society in which he
or she lives [22,23]. The interviews and questionnaires show that
most informants nd it difcult to articulate their thoughts about
this aspect. Most see GD as neither a disease nor a social
construct, but as a normal, but less frequent variation of gender
expression. However, some note that you would not need med-
ical procedures to make the lives of people with GD more satis-
fying if it were merely a normal variation. The need for treatment
is what denes GD as a disorder, they state. Others state that it is
a disease in the sense that there is a disconnection between body
and mind, which causes suffering.
Even in the most gender dysphoria benevolent society many
individuals with gender dysphoria would still need medical
procedures to make their lives more satisfying, and I think
that this is what makes gender dysphoria a disorder (but not a
mental one).
-Psychiatrist
We asked whether these diverse ideas and theories about the
nature of GD affect the decision whether to use puberty sup-
pression in adolescents with GD. Most informants state that a
classication in itself should never be a factor in deciding what
treatment to follow. However, one informant stated:
Ind it extremely dangerous to let an adolescent undergo a
medical treatment without the existence of a pathophysi-
ology and I consider it just a medical experimentation that
Figure 1. Participating informants.
L.J.J.J. Vrouenraets et al. / Journal of Adolescent Health xxx (2015) 1e73
does not justify the risk to which adolescents are exposed[.]
Gender dysphoria is the only situation in which medical
intervention does not cure a sick body, but healthy organs are
mutilated in the process of adapting physical and congruent
psychological identity.
-Psychiatrist
The role of physiological puberty in developing a consistent
gender identity
In the literature, the concern is raised that interrupting the
development of secondary sex characteristics may disrupt the
development of a gender identity during puberty that is
congruent with the assigned gender [24]. The interviews and
questionnaires show that some treatment teams share this view.
I have met gay women who identify as women who would
certainly have been diagnosed gender dysphoric as children
but who, throughout adolescence, came to accept themselves.
This might not have happened on puberty blockers.
-Psychologist
I believe that, in adolescence, hypothalamic inhibitors should
never be given, because they interfere not only with
emotional development, but [also] with the integration pro-
cess among the various internal and external aspects char-
acterizing the transition to adulthood.
-Psychiatrist
However, although most informants agreed on the fact that
treatment with puberty suppression indeed may change the way
adolescents think about themselves, most of them did not think
that puberty suppression inhibits the spontaneous formation of a
gender identity that is congruent with the assigned gender after
many years of having an incongruent gender identity. Some pro-
fessionals stated that, although the blockers may disrupt the
development of a consistent gender identity, in some cases, the
very real risks of the present (the young persons distress and
consequentpossible suicide risk) override the possible risks for the
future (the individuals uncertainty). According to them, we need
to take into account what is the best for that individual person.
I think that the distress for a child experiencing the wrong
puberty is so great that it overrides the opinion that the child
should have the experience of crisis of gender.’”
-Psychiatrist
Various endocrinologists made the comparison with preco-
cious puberty; a medical condition in which puberty blockers
have been used for many years, and no cases of GD have been
described (at least to their knowledge). Besides, most of them
emphasize that they deliberately start treatment with puberty
suppression only when the youngsters have reached Tanner
stage two or three to give them at least a kind of feelingwith
puberty before starting with puberty suppression. Furthermore,
some state that this is an issue that should be researched so that
decisions can be made based on facts rather than on opinions.
The role of comorbidity
The risk of co-occurring psychiatric problems in children and
adolescents with GD is high. The percentage of children referred
for GD who fullled DSM criteria of at least one diagnosis other
than GD is 52% [25]. The psychiatric comorbidity in adolescents
with GD is 32% [26]. Another study shows that 43% of the children
and adolescents seen in a gender identity clinic suffer from major
psychopathology [27]. To date, the precise mechanisms that link
GD and coexisting psychopathology are unknown. The interviews
and questionnaires show that professionals think that it differs
between individuals and it depends on the comorbid problem
whether the GD and the co-occurring problem(s) are merely
coexisting or interrelated. The impact of society is also mentioned
as a mediating factor. Some professionals stress that we have to
keep in mind that society marginalizes minority groups.
This [marginalization of minority groups] can lead to inter-
nalized self-hatred and many other mental health difculties
such as self-harm, depression, anxiety, isolation, suicide etc.
Being picked on or being abused as minority groups leads to
fear which is a mediating variable for mental health
problems.
-Psychologist
I see gender dysphoria as a cause of reactive co-occurring
problems (such as anxiety and depression); nevertheless,
comorbidity with other non-reactive psychiatric problems
(such as attention decit disorder with hyperactivity, bipolar
disorder.) can present in parallel.
-Psychiatrist
We asked whether severe coexisting psychopathology
inuences the treatment of the GD, and in what way. Some pro-
fessionals stress the importance of addressing treatment of severe
coexisting psychopathology before addressing GD-related medi-
cal interventions in youngsters with GD. Others state that it de-
pends on the specic comorbid problem whether it inuences the
treatment of the GD and in what way. They state that, although
coexisting psychopathology may interact with GD and GD-related
medical interventions, the GD and the comorbid problem may
result from completely different underlying processes and should
therefore have separate treatment plans, goals, and strategies.
Possible physical or psychological harmful effects of early medical
interventions and of refraining from interventions
The possible consequences of suppressing puberty for
cognitive and brain development are unclear and debated at this
moment [9,28]. The normal pubertal increase in bone mineral
density may be attenuated by puberty suppression, and it is
uncertain if there is complete catch-up after treatment with
cross-sex hormones [29e31]. In the interviews and question-
naires, the loss of fertility was often mentioned as a major
consequence of treatment. In addition, various informants
stressed the importance of the fact that the penis and scrotum
should be developed enough to be able to use this tissue to create
a vagina later in life. Very early use of puberty suppression im-
pairs penile growth and consequently makes certain surgical
techniques impossible.
Although (the sparse) research until now mostly shows no
negative, and even positive results regarding the consequences
of treatment with puberty suppression [28,32], proponents
remain cautious and opponents skeptical because of the fact that
(long-term) risks and benets of available treatments have not
been fully established.
The positive attitude of many health care providers in giving
hypothalamic blockers[.] is based on the need to conform to
L.J.J.J. Vrouenraets et al. / Journal of Adolescent Health xxx (2015) 1e74
international standards, even if they are conscious of a lack of
information about medium and long term side effects.
-Psychiatrist
In the interviews and questionnaires, harmful effects of
refraining from interventions are mentioned too. Multiple pro-
fessionals state that many young gender dysphoric people will
harm themselves without intervention or at least the promise of
future treatment options. Some professionals mention that
nowadays the average age at which puberty starts is earlier than
a few decades ago. This makes them wonder whether the age
criterion of 12 years, that many treatment teams use, is still
suitable.
The question cannot be posed as do something which may
cause harmagainst doing no harm, as doing nothing results
in very high levels of distress and poor outcome as well.
-Psychiatrist
So why are we saying 12? It is arbitrary if the average age for
the start of puberty in the UK or in Northern Europe is now 8
or 9. [.] this is a very lively debate in our team. [.]It
[lowering the age of starting with puberty suppression] is for
the younger ones, who are going into puberty at 10 or 11. I
mean I think we probably have to extend it to them.
-Psychologist
Ideas about child competence and the decision making authority
Competence is an important point of disagreement when pu-
berty suppression is discussed. In the literature, proponents have
concluded that relatively young children can participate mean-
ingfully in the consent process, whereas opponents raise doubts
about what children can understand [33e35]. Most informants
state that competence should be determined for every single case
individually. Most state that children develop at different rates in
terms of their physical, mental, emotional, and sexual maturation.
They state that the ability of adolescents to make decisions
regarding their own medical treatment should be determined
based on the following diverse aspects: their cognitive abilities,
emotional maturity, and the presence or absence of comorbidities.
Various informants do mention the childs chronological age
as a criterion; some state that the child should be at least 12,13,
or 14 years old, whereas others mention the age of 16 years as the
cut-off age.
I suppose[.] the child [should be] at least 12 or 13 [years
old] but it depends on the child, their background, family and
supportive systems too.
-Psychologist
Some state that not a childs chronological age should count,
but the fact that the childs puberty has started. One informant
stated that the decision whether to start with hormones should
only be made during adulthood:
We should facilitate his or her process of integration in the
society and if he or she would undergo hormone- and surgical
treatments he or she could decide [on this] during
adulthood.
-Psychiatrist
We asked who should have authority to take decisions
regarding early medical treatment. Some informants stated that
the adolescent is able to give informed consent himself or herself.
Others stated that youngsters must at least partially depend on
their parents or other caregivers to make decisions regarding their
treatment. Some noted that there is no discussion in other situa-
tions where youngsters receive medication; for example, parents
making decisions about starting children on anti-epileptic medi-
cation without the childs consent. These informants therefore
questionwhy there is a discussion about the authority to decide on
the start of medication in GD. It was further mentioned that a team
of specialists experienced in treating transgender youth are
responsiblefor these youngsters andthe recommended treatment.
People do not ask about how kids feel about going on this
mood stabilization, how do you feel about going on this
medication for depression. The only place where this happens
is gender. [.] all kids are entering the clinic on ve psycho-
tropic medications without hesitation [of the parents and
clinicians]. And nobody has this discussion.
-Pediatrician
The fact that somebody wants something badly, does not
mean that a health care provider should do it for that reason;
a medical doctor is not a candy seller.
-Professor of health care ethics and health law
The roleof the social contextin the way genderdysphoria is perceived
The study shows that the way gender-variant behavior of
youth is perceived is very different in the various countries. Some
informants think that the way gender-variant behavior is
approached inuences to a large extent whether it is patholo-
gized or not.
I believe thathypothalamic blockers treatment satises health
care providersanxiety, pathologizing individuals with gender
dysphoria, inducing them to follow the sex-gender binarism.
-Psychiatrist
You might think that the experience of gender dysphoria is
kind of a solution [for all their problems] that is culturally
available for adolescents nowadays.[.] I think that the culture
is kind of offering or allowing this idea that all problems are
stemming from the gender problem. And then theystick to this
xated idea and [they] seek for assessment and we readily see
that they have numerous and relatively serious psychological
and developmental problems and mental health disorders.
-Psychiatrist
Some informants wondered in what way the increasing
media attention affects the way gender-variant behavior is
perceived by the child or adolescent with GD and by the society
he or she lives in. They speculated that television shows and
information on the Internet may have a negative effect and, for
example, lead to medicalization of gender-variant behavior.
They [adolescents] are living in their rooms, on the Internet
during night-time, and thinking about this [gender dysphoria].
Then they come to the clinic and they are convinced that this
[gender dysphoria] explains all their problems and now they
have to be made a boy. I think these kinds of adolescents also
take the idea from the media. But of course you cannot prevent
this in the current area of free information spreading.
-Psychiatrist
Furthermore, interviews and questionnaires show that
treatment teams feel pressure from parents and adolescents to
start with treatment at earlier ages.
L.J.J.J. Vrouenraets et al. / Journal of Adolescent Health xxx (2015) 1e75
Discussion
Using empirical methods, our project aimed to explicate the
considerations of proponents and opponents of puberty
suppression in GD. A representative international group of pro-
fessionals participated, enabling us to identify ideas, assumptions,
and theories on GD (treatment). These data give us unique in-
sights in the GD practice and the way ethical concepts function in
this eld.
The interviews and questionnaires show that the discussion
regarding the use of puberty suppression goes in diverse
directions and is in full swing. It touches on fundamental ethical
concepts in pediatrics; concepts such as best interests, autonomy,
and the role of the social context. It is striking that the standards
of care for GD of the World Professional Association for Trans-
gender Health and the Endocrine Society [8,9] are considered too
liberal and too conservative. Furthermore, since the start of this
study, puberty suppression has been adopted as part of the
treatment protocol by increasing numbers of originally reluctant
treatment teams. More and more treatment teams embrace the
Dutch protocol but with a feeling of unease. The professionals
recognize the distress of gender dysphoric youth and feel the
urge to treat them. At the same time, most of these professionals
also have doubts because of the lack of long-term physical and
psychological outcomes. Most informants acknowledge proar-
guments and counterarguments regarding the use of puberty
suppression. Several teams, who work according to the Dutch
protocol, are also exploring the possibility of lowering the cur-
rent age limits for early medical treatment although they
acknowledge the lack of long-term data.
For several informants, a reason to use puberty suppression
was the fear of increased suicidality in untreated adolescents
with GD. Research shows that transgender youth are at higher
risk of suicidal ideation and suicidal attempts [3,36]. Neverthe-
less, caution is needed when interpreting these data because
they do not show causality or directionality. Another aspect
mentioned by various informants is that nowadays the average
age at which puberty starts is earlier than a few decades ago.
Indeed, there is a research showing earlier puberty in girls in the
United States and Europe [37e39]. In U.S. boys, data were found
to be insufcient to evaluate a secular trend [37].
As still little is known about the etiology of GD and long-term
treatment consequences in children and adolescents, there is
great need for more systematic interdisciplinary and (world-
wide) multicenter research and debate. As long as there are only
limited long-term data in support of the guidelines, there will be
no true consensus on treatment. To advance the ethical debate,
we need to continue to discuss the diverse themes based on
research data as an addition to merely opinions. Otherwise ideas,
assumptions, and theories on GD treatment will diverge even
more, which will lead to (even more) inconsistencies between
the approaches recommended by health care professionals
across different countries.
Several professionals mentioned that participation in the
study made them think more explicitly about the various
themes, and it encouraged them to discuss the issues in their
teams. In the Dutch teams, we therefore introduced moral
deliberation sessions to talk about these ethical topics. The rst
reactions of the professionals were positive; the sessions made
them rethink essential aspects of the protocol. Furthermore,
they had more understanding for the viewpoint of other dis-
ciplines. Moral deliberation sessions could be a valuable step in
gaining more insight in the contexts of GD treatment dis-
agreements, especially as long as treatment data are still
lacking.
There are strengths and weaknesses to the present study. The
qualitative nature of the study made it possible to nd out, in
depth, the ways in which people think or feel about specic
topics. Another strength of this study is the representativeness of
the participants, by interviewing 36 professionals from ten
different countries. This gives a wide variety of considerations of
professionals in European and North American countries.
Nevertheless, the considerations explicated in this study are
therefore solely Europe and North America based. The consid-
erations of professionals are likely to be different in other parts of
the world.
We encourage gathering more qualitative research data from
treatment teams of additional countries, aggregating a broader
range of views on the treatment of gender dysphoric youth. More
empirical data from treatment teams all over the world could
lead to new information and/or conrmation of the results found
in this study.
Acknowledgments
The authors would like to thank all the professionals who
have participated in this study and have taken the time to share
their considerations and experiences with them. Besides, the
authors would like to thank Henriette Delemarre-van de Waal, a
well-respected project team member who passed away in
February 2014 and unfortunately could not see the end of this
study. Previous presentations: oral presentation during the 2014
World Professional Association for Transgender Health Congress
in Bangkok, Thailand (February 2014); poster presentation dur-
ing the Endocrine Society Congress in Chicago, the United States
(June 2014); oral presentation during the World Congress of
Bioethics in Mexico City, Mexico (June 2014); poster presentation
during the European Society for Paediatric Endocrinology in
Dublin, Ireland (September 2014); oral presentation during the
2015 European Professional Association for Transgender Health
Congress in Ghent, Belgium (March 2015); and workshop during
the spring congress of the Dutch Association for Psychiatry in
Maastricht, The Netherlands (MarcheApril 2015). The funding
source had no involvement in study design, in the writing of the
report, and in the decision to submit the article for publication.
Clinical trials registry site and number: institutional review
board of the Leiden University Medical Center; P14.094.
Funding Sources
This study was supported by the Netherlands Organization for
Health Research and Development (ZonMW)-Grant 731010002.
Supplementary data
Supplementary data related to this article can be found at
http://dx.doi.org/10.1016/j.jadohealth.2015.04.004.
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... 6,13 Critiques of puberty blockers point to the lack of rigorous research surrounding the intervention on physiologically healthy children, research that shows decreased fertility A qualitative study conducted by Vrouenraets et al. of 17 treatment teams for TGE youth found 7 main domains relating to physician concerns surrounding puberty blockers. 14 These include (1) ambiguity on the etiology of GD; (2) confusion around whether GD is a mental disorder or normal variation; (3) possible influence of puberty on gender; (4) the presence of comorbid psychiatric conditions; (5) possible harm from the treatments; (6) the decisional capacity of children; and (7) the portrayal of immediate treatment for GD in media and society as the answer for all problems. 15 A sense of confusion or uncertainty is apparent in almost all of the seven domains, highlighting the discomfort that can surround this treatment. ...
... (13) Was loss to follow-up after baseline 20% or less? (14) Were key potential confounding variables measured and adjusted statistically for their impact on the relationship between exposure(s) and outcome(s)? ...
... En pédiatrie, la norme du «meilleur intérêt» est devenue la norme dominante dans la prise de décision [110], mais elle s'avère souvent difficile à appliquer [111]. Les [112]. À première vue, ce «droit à un avenir ouvert» semble raisonnable, mais le problème est que ce principe pourrait être utilisé aussi bien par les opposants que par les partisans d'interventions rapides. ...
Thesis
Aujourd'hui, les progrès dans les biotechnologies et dans le champ de la médecine défient les lois de la biologie pour permettre à des hommes et des femmes transgenres d'advenir en tant que sujet et d'accéder à la parentalité. Ces avancées soulèvent dans de nombreux pays de vifs débats sociétaux, mais aussi de vraies questions éthiques l'enjeu majeur in fine étant pour la plupart des auteurs le bien-être des enfants à naître. Nous avons ainsi cherché à comparer le développement cognitif, la santé mentale, l'identité de genre, la qualité de vie et la dynamique familiale à l'aide d'instruments standardisés et de protocoles expérimentaux chez 32 enfants conçu·e·s par IAD en France dont le père est un homme transgenre et la mère une femme cisgenre (identifiée au genre féminin qui lui a été assigné à la naissance), la transition féminin vers masculin du père ayant eu lieu avant la conception. Nous avons constitué deux groupes témoins appariés pour l'âge, le sexe et la situation familiale : le premier composé d’enfants né·e·s de parents cisgenres hétérosexuels ayant eu recours à l’IAD pour concevoir, le second composé d’enfants conçu·e·s par rapport sexuel de parents hétérosexuels cisgenres.Nous n'avons trouvé aucune différence significative entre les groupes en ce qui concerne le développement cognitif, la santé mentale et l'identité de genre, ce qui signifie que ni la paternité transgenre ni l'utilisation des IAD n'ont eu d'impact sur ces caractéristiques. Les résultats de l'analyse descriptive ont montré un développement psycho-affectif positif. De plus, lorsque nous avons demandé à des groupe d’évaluateur·trice·s de différencier les dessins de famille du groupe d'enfants de pères trans’ de celleux qui étaient conçu·e·s par rapport sexuel de parents cisgenres, aucun n'a pu différencier ces groupes au-dessus des niveaux du hasard, ce qui signifie que ce que les enfants ont exprimé à travers le dessin de famille n'indiquait pas d’indices liés à la paternité transgenre. Cependant, lorsque nous avons étudié les émotions exprimées par les mères et les pères à partir d’un extrait de discours de 5 minutes (Five Minute Speech Sample), nous avons constaté que les émotions exprimées par les pères transgenres étaient plus intenses que celles des pères cisgenres qui ont conçu par rapport sexuel ou par IAD.Nous concluons que ces premières données empiriques sur le développement de l'enfant dans le contexte de la trans-parentalité sont rassurantes. Nous pensons que cette recherche améliorera également les soins aux couples transgenres et ceux de leurs enfants dans une société où les projections sociétales comme l'accès aux soins restent difficiles pour cette population. Cependant, des recherches transdisciplinaires complémentaires sont nécessaires, en particulier avec les adolescents, les jeunes adultes et en périnatalité.
... 7 23 Cohen-Kettenis and van Goozen note that there is a risk that adolescents treated with puberty-suppression may consider this 'a guarantee of sex-reassignment' which 'could make them less rather than more inclined to engage in introspection.' 29 Some HCPs have expressed the concern that the use of puberty blockers 'leaves a young person in developmental limbo without the benefit of pubertal hormones or secondary sexual characteristics, which would tend to consolidate gender identity' 42 or (similarly) that this treatment may 'disrupt the development of a consistent gender identity.' 14 Further, while (as noted above) some HCPs consider surgical outcomes to be more satisfactory following puberty suppression, numerous specialists note that the use of GnRH analogues in young people can complicate surgical options later; for example, where the prevention of normal development of secondary sex characteristics leaves insufficient tissue for use in vaginoplasty. 14 24 All of this serves to suggest that the currently understood 'best practice' (affirmation of self-diagnosis and direction towards physiological interventions) ought to be re-evaluated. ...
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Chapter
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Since the turn of the century, we are witnessing a dramatic surge in the numbers of children and adolescents referred to gender clinics, this is happening in the context of general increase in numbers of individuals identifying as non-binary. The chapter ahead will initially address the shifting landscape of gender dysphoria (GD), and provides a comprehensive overview of the latest findings in the fields of autism and GF. The higher rates of autism’ diagnosis among gender diverse samples prompted the development of several hypotheses that attempt to explain the link between autism spectrum and gender spectrum, as well as development of relevant clinical guidelines that contain strong advocacy for adolescents with neurodiversity not to be precluded from gaining access to gender-related services. In the public arena, a highly publicised UK High Court’s case that is commonly referred to as Bell v Tavistock highlighted the growing concerns regarding the unexplained surge in the number of adolescents identifying as having GF, as well as pointed to the lack of evidence that hormones and surgery improve long-term outcomes. The chapter explored the recommendations that came out of this ruling and highlighted the implications for Australian jurisdiction by illustrating medico-legal changes on Perth-based gender services.
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In the context of transgender health, most people are not comfortable with allowing a twelve-year-old child with gender dysphoria to elect to undergo gender reassignment surgery. The likelihood is too high that the child would be unable to fully comprehend the scope of a decision that carries significant, permanent consequences, particularly because the decision to surgically change gender is based upon a conception of gender that can fluctuate during adolescent years. Conversely, however, most people would not contend that this fluidity is reason to wholly deny certain medical care such as hormonal treatments to transgender youth, a demographic with extremely high rates of violent behavior, self-harm, and suicide. This paper will explore ethical considerations to this emerging debate of what therapeutic options should be offered to transgender children and adolescents. Pediatric endocrinologists have been treating gender dysphoric adolescents with puberty-suppressing drugs and, to a lesser extent, with cross-sex hormone therapies for more than twenty years. Clinicians and thought leaders have mentioned ethical components of this emerging practice in the few cohort studies and clinical review articles about the subject. However, ethics have generally been a secondary consideration in the medical academic literature. In this paper, I will provide a brief overview of the practice, summarize the current research on hormone treatment for transgender minors, and provide an ethical analysis of the practice.
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Background: In recent years, puberty suppression by means of gonadotropin-releasing hormone analogs has become accepted in clinical management of adolescents who have gender dysphoria (GD). The current study is the first longer-term longitudinal evaluation of the effectiveness of this approach. Methods: A total of 55 young transgender adults (22 transwomen and 33 transmen) who had received puberty suppression during adolescence were assessed 3 times: before the start of puberty suppression (mean age, 13.6 years), when cross-sex hormones were introduced (mean age, 16.7 years), and at least 1 year after gender reassignment surgery (mean age, 20.7 years). Psychological functioning (GD, body image, global functioning, depression, anxiety, emotional and behavioral problems) and objective (social and educational/professional functioning) and subjective (quality of life, satisfaction with life and happiness) well-being were investigated. Results: After gender reassignment, in young adulthood, the GD was alleviated and psychological functioning had steadily improved. Well-being was similar to or better than same-age young adults from the general population. Improvements in psychological functioning were positively correlated with postsurgical subjective well-being. Conclusions: A clinical protocol of a multidisciplinary team with mental health professionals, physicians, and surgeons, including puberty suppression, followed by cross-sex hormones and gender reassignment surgery, provides gender dysphoric youth who seek gender reassignment from early puberty on, the opportunity to develop into well-functioning young adults.
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When the practice of sex-change surgery first emerged back in the early 1970s, I would often remind its advocating psychiatrists that with other patients, alcoholics in particular, they would quote the Serenity Prayer, "God, give me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference." Where did they get the idea that our sexual identity ("gender" was the term they preferred) as men or women was in the category of things that could be changed? Their regular response was to show me their patients. Men (and until recently they were all men) with whom I spoke before their surgery would tell me that their bodies and sexual identities were at variance. Those I met after surgery would tell me that the surgery and hormone treatments that had made them "women" had also made them happy and contented. None of these encounters were persuasive, however. The post-surgical subjects struck me as caricatures of women. They wore high heels, copious makeup, and flamboyant clothing; they spoke about how they found themselves able to give vent to their natural inclinations for peace, domesticity, and gentleness—but their large hands, prominent Adam's apples, and thick facial features were incongruous (and would become more so as they aged). Women psychiatrists whom I sent to talk with them would intuitively see through the disguise and the exaggerated postures. "Gals know gals," one said to me, "and that's a guy." The subjects before the surgery struck me as even more strange, as they struggled to convince anyone who might influence the decision for their surgery. First, they spent an unusual amount of time thinking and talking about sex and their sexual experiences; their sexual hungers and adventures seemed to preoccupy them. Second, discussion of babies or children provoked little interest from them; indeed, they seemed indifferent to children. But third, and most remarkable, many of these men-who-claimed-to-be-women reported that they found women sexually attractive and that they saw themselves as "lesbians." When I noted to their champions that their psychological leanings seemed more like those of men than of women, I would get various replies, mostly to the effect that in making such judgments I was drawing on sexual stereotypes.