Surgery and the assignment of gender
As the previous chapter explained, intersex is a category that includes
a range of biological variations, some of which require medical intervention,
and some of which do not. Medical care may include surgery. There are two
features of the surgical dimension of intersex that were discussed during the
Surgery to create apparently 'normal' gender appearance,
particularly in relation to the genitals; and
Surgery to manage health risks, particularly of cancer.
In some circumstances, both can have sterilising effects. Therapeutic
surgery in the genital region is sometimes required to address differences of
sexual development, such as in the case of cloacal exstrophy where a child
'will have the bladder and a portion of the intestines, exposed outside the
However there are other conditions, such as cases of CAH or AIS, where the
external manifestation of the condition does not present a health problem. In
these cases non-therapeutic surgery may still be considered, to produce the
physical appearance of 'normal' male or female genitalia. Such surgery may
include labiaplasty (surgery to modify, usually by reducing the size of, the
labia), vaginoplasty (the creation, expansion or modification of a vaginal
canal), or gonadectomy (the removal of testicles or other external gonadal
tissue inconsistent with the sex of assignment).
The committee understands that surgery is just one element of the
medical management of differences in sexual development, but it was the aspect
that was of greatest concern to stakeholders. As OII put it, 'surgical cosmetic
"normalisation" and involuntary sterilisation are the most serious
issues of concern to the intersex community'.
This chapter focusses on cosmetic and 'normalising' treatments. The following
chapter deals with the issue of medical intervention to manage potentially
elevated cancer risk. Both chapters emphasise discussion of treatment in
children because of some of the particular human rights issues that this
raises, but the committee acknowledges that it is not only children who are
The chapter begins by describing the development of medical and social
thought about intersex and the assignment of gender, in order to help explain
the current intense debate about assignment of gender particularly where it
includes surgery. The committee considered information provided to it about
what is current practice regarding normalising surgery, as well as how the most
recent guidelines have signalled some changes of approach. The committee then
reviews the various problems with normalising surgery, before concluding that
some further reform to guidelines is needed, as well as more rigorous
application of them. Effective application of guidelines is also the subject of
the fifth chapter, which includes a proposal to improve the formulation,
oversight and application of guidelines.
'Normalising' surgery – overview and development
As acknowledged in previous chapters, intersex physiology is considered
within the medical community as a medical condition with little or no
consideration of the individual. This 'condition' has both physical and
psychological elements. Medical texts caution against failing to acknowledge
and treat the potential psychological consequences of not adhering to
standardised societal notions of male and female. As also explored in chapter
one, Australian society does not readily acknowledge intersexuality or the
intersex variations that traverse the binary of male and female. It is only
within the past year that some Australian governments have moved to acknowledge
intersexuality in the context of administrative procedures and
An emphasis on removing difference, and thus obscuring intersexuality,
is evident in historical medical practice. The rationale for 'normalising'
surgery, and the social and medical support for surgical gender assignment, has
changed over time. Early thinking was based on the idea of determining a person's
'true sex', which by the early twentieth century meant the sex determined by
However, this was not an approach universally adopted. What was always
accepted, though, was that a person had to be assigned a single sex.
The combination of advances in surgical techniques, scientific understanding of
the genetics and biology of sex, and medicalization of intersex, combined to
accelerate 'treatment' and the assigning of sex, including through surgery.
However, until the 1950s there was no agreed model on how to approach the
The 'optimal gender policy'
The committee was advised that surgery as a standard response to
intersexuality commenced in the mid–20th century.
The advent of 'normalising' surgery coincided with, and was supported by, the
development of the 'optimal gender policy', under which intersex children were
'assigned' a gender in infancy. The policy was the result of research published
in the 1950s through to the early 1980s by Dr John Money. The
Australian Human Rights Commission provided the following summary of
Dr Money's theory:
In the 1950s, Dr John Money, a psychologist, believed that
children are born without a fixed gender identity. According to this view, it
was possible to make the genitalia appear male or female and the child could
then be raised as a boy or a girl. Parents and the child were told little about
the surgery and treatment to avoid psychological trauma.
As the Swiss National Advisory Commission on Biomedical Ethics has
commented, normalisation surgery was one part of imposing a gendered identity
on an infant. A form of social engineering, the surgery assigned to an infant a
socially standardised gender category of either male or female:
Until the end of the 20th century, in line with the 'optimal
gender policy' advocated by John Money (1955), a child with a DSD was generally
assigned a gender at an early age. The child's body was surgically aligned with
the assigned gender in the first months and years of its life...The child was
then to be consistently reared in the surgically assigned gender role, without
it (or the family) being informed about its differences or the reasons for the
interventions. Secrecy was maintained even into adulthood. It was believed this
approach would enable the child have a 'normal' physical and psychosexual
Reviewing the history of gender assignment theory, Meyer-Bahlberg
explained optimal-gender policy in more sophisticated terms:
The question the optimal-gender policy asks at birth is not:
"Is this a boy or a girl?", but rather: "Will this child have a
better chance for a reasonable life as a male or a female?" Thus, the
basis for the gender-assignment decision is what one can predict in infancy,
given the child's particular syndrome and its severity, and given all that is
known about the natural history of the condition and its treatment options.
Under this policy, early surgery of the external genitalia is recommended to
avoid discrepancies between the child's assigned gender and genital appearance
and thereby, to facilitate consistent sex-typing by the parents and others.
...even where there is a local consensus to follow the
optimal-gender policy, decision making in the individual case can be difficult,
because the prognostic criteria are not necessarily more definitive than the
Meyer-Bahlberg noted that Money's own theories around intersex did
evolve over time, leading to rejection of the idea that an infant was a 'blank
slate' who could be assigned any gender successfully.
Thus, while 'optimal gender' theory began emphasising 'nurture', it evolved to
take account of aspects such as the pre- and post-natal influence of hormones.
However, the options for surgical normalisation loomed large in decision
making. As the Australian Paediatric Endocrine Group (APEG) explained to the
In the past, it was thought that adequate penis size was the
main determinant of whether an infant with ambiguous genitalia should be
assigned male or female at birth. Following gender assignment, surgery was
performed to normalise the appearance of the external genitalia, and to remove
testes in children raised female.
Under the approach taken by Money and others, treatment guidelines were
developed. These included:
Extensive and fast diagnostic of the intersexual state.
Early sex-assignment (before 18 months) and consequent rearing.
Early medical correction of the ambivalent genitalia to secure
the chosen sex assignment and to avoid the risk of insecurities regarding
gender identity and psychological distress.
In cases of female sex assignment: early removal of the gonads to
avoid masculinization during puberty.
Hormone substitution at time of puberty according to the
No disclosure to social environment regarding the intersexual
state of the child.
Professor Sarah Creighton is a gynaecologist who has conducted extensive
research in the field. Discussing the reasons behind surgery on infants who are
genetically female but have some male characteristics (referred to as virilisation),
The traditional management of the virilised female infant has
centred on restoring ‘normality’. Once the diagnosis has been made and the
infant assigned to a female sex of rearing, feminizing genital surgery almost
inevitably follows...Proponents of feminizing genitoplasty in infancy cite the
following as reasons to operate:
a more stable development of gender identity;
a better psychosexual and psychosocial outcome;
relief of parental anxiety;
provision of a vaginal introitus for psychological relief;
menstruation and intercourse in adolescence and adulthood.
There is often an unstated assumption in some of the
literature promoting infant vaginoplasty that by performing the surgery in
infancy the child can be ‘cured’ and spared the potential psychological trauma
of surgery in later childhood or adolescence.
As APEG observed, infant surgery was performed on the understanding that
this would 'allow the child to develop without the psychosocial stigma or
distress which is associated with having genitalia incongruous with the sex of
Criticisms of the 'optimal gender
In the 1990s and early 2000s, there was a wide range of criticisms
levelled at the prevailing practices of medical treatment of intersex. These
criticisms have come from several different points of view.
Some intersex people were critical of the medical process under which
they had been treated without themselves being involved or giving consent. They
considered that they had been 'wronged by medical management', with problems
such as inappropriate sex assignment, and surgical treatment that impaired
APEG outlined what happened:
some individuals who were assigned female but later
identified as male and who had tissue removed from their clitoris/phallus, as
well as those who continued to identify as female but feel they have poor
genital outcomes following removal of tissue from the enlarged clitoris, are
angry about surgery which was performed in their childhood. These concerns were
brought into the public and policy spotlight by patient support groups...
Researcher Katrina Karkazis recounts a speech given in 2000 by leading
American intersex activist Cheryl Chase:
Doctors, she argues, do not understand female sexuality,
think homosexuality is a failure of treatment, refuse to refer families to
therapists and social workers, and encourage parents never to discuss the
diagnosis with others or the child, thus instilling extraordinary shame in
parents (and hence the child) about the condition. Focused on normalising
infants, she notes, doctors have failed to ask what intersex individuals
themselves want. Early genital surgery, she says, is intersex genital
The activist community protested at medical conferences and meetings,
opposing unnecessary surgical intervention, and were highly critical of the
secrecy that sometimes led people to find out about their intersex nature by
accident during adolescence or adulthood.
The legal and ethical basis for medical intervention was questioned.
Feminist author Alice Dreger wrote at the time:
It is not at all clear if all or even most of the intersex
surgeries done today involve what would legally and ethically constitute
informed consent. It appears that few intersexuals or their parents are educated,
before they give consent, about the anatomically strict psychosocial model
At a finer level, many of the latest particular cosmetic
surgeries being used on intersexed babies and children today remain basically
unproven as well, and need to be described as such in consent agreements.
Another reason that the 'optimal gender' approach was criticised was
that some researchers believed it neglected biological influences on sex and
gender, including the role of sex hormones. Prominent among these critics have
been Milton Diamond, whose work began in studies of animal and human sexual
development; and William Reiner, who has worked with a range of patients both
intersex and not.
Reiner, in a number of studies, found that a large proportion of individuals
in cases of cloacal exstrophy, gonadal dysgenesis and partial androgen
insensitivity syndrome did not accept their male sex assignment.
His research led him to conclude that the effects of hormones during pregnancy
'appeared to dramatically increase the likelihood of recognition of male sexual
identity independent of sex-of-rearing'.
In the mid-2000s, Tom Mazur also examined the relationship between sex
assignment and adult gender identification. He examined the extent to which
individuals with CAIS, PAIS, or micropenis 'reassigned themselves from their
initial gender assignment'. Although he concluded that self-initiated gender
reassignment was 'rare',
it in fact occurred in ten per cent of cases. More significantly, most
people in his sample had not had a gender reassignment by doctors after their
birth. Among those few who had experienced a reassignment by doctors,
those with PAIS appeared to relatively frequently reject
that reassignment later in their lives. Nevertheless, samples were small, the
follow-up age of subjects was sometimes too young for conclusions to be drawn
(as Mazur himself noted)
and thus, despite the analysis, outcomes were unclear.
The views of intersex people about their medical treatment have also
challenged medical treatment approaches. Meyer-Bahlburg and others analysed 72
questionnaire responses from intersex persons, concerning satisfaction with
their gender, genital status and sexual functioning, and questions about their
views about the optimal age for surgical intervention, and whether there should
be a third gender category. Most respondents were satisfied with their gender,
however most supported some limits on the age at which surgery should occur, a
third of the respondents indicated surgery should not occur until the person
was an adult and could give their consent, and less than half indicated they
were 'mainly satisfied' with their sexual functioning.
It was recognised that long-term studies in the area were few in number
and did not produce consistent results. On the one hand, Creighton surveyed a
range of literature and reported on outcome studies of a patient cohort at
University College London Hospital. Her paper reported widespread complications
and negative outcomes, including impairment on several measures in those
intersex women who had undergone genital surgery.
Surgery has been regarded as the cornerstone of treatment for
virilised female infants and parents... However, there is very scanty evidence of
a satisfactory postpubertal cosmetic or anatomical outcome...In the absence of
firm evidence that infant feminizing genital surgery benefits psychological
outcome, then the option of no infant genital surgery must be discussed with
the family...The current management of affected patients and their families is
difficult and no consensus amongst clinicians has yet been reached.
On the other hand another team of researchers analysing information on a
different group of intersex individuals reached a quite different conclusion:
All participants in this survey who had genital
reconstructive surgery had it in infancy or early childhood. In the absence of
compelling evidence that deferred surgery would have yielded better outcomes,
these results support continuation of the practice of early genital reconstructive
surgery for ambiguous genitalia, provided that every attempt has been made to
reach a definitive [determination of the cause].
At an American Academy of Pediatrics conference in the late 1990s, the
clinical criticisms made by Diamond and others led to a suggestion for new
restrictions on 'the medical management of Differences in Sex Development':
There should be a general moratorium on sex assignment
cosmetic surgery when it is done without the consent of the patient
This moratorium should not be lifted unless and until
complete and comprehensive retrospective studies are done and it is found that
the outcomes of past interventions have been positive
Efforts should be made to undo the effects of past physician
deception and secrecy.
Although the first two of these three recommendations have not been
adopted, the years leading up to 2006 saw a degree of change in the debate and
some reform of treatment standards, culminating in the adoption in 2006 by
medical specialists of what is known as the 'Consensus Statement on management
of intersex disorders'.
The 2006 Consensus Statement
Medical practitioners emphasised that the medical response to intersex
conditions has changed since the 1990s.
Endorsed by a group of medical specialists in 2006, the Consensus Statement
on Management of Intersex Disorders is widely presented as current
international best practice for the medical treatment of intersex. The
statement was developed in response to patient advocacy, and advancements in
diagnosis, surgical techniques and the field of psychology.
The statement begins with the words: '[t]he birth of an intersex child
prompts a long-term management strategy that involves myriad professionals.'
The statement, therefore, is built on the premise that intersex persons require
medical attention and management. It concludes that the optimal treatment of
intersex individuals will conform to five principles. These include the
directive that 'all individuals should receive gender assignment'. The
principles also include the caveat that 'gender assignment must be avoided
before expert evaluation in newborns'.
To avoid 'uncertainty [that] is stressful and unsettling for families',
the Consensus Statement approves gender assignment in infancy. However, such
assignment may not necessarily be surgical. The statement does not support
normalising surgery in every case. It argues that such surgery should only
occur for 'severe virilisation (Prader 3–5)', referring to three of the five
degrees of virilisation recognised under the Prader scale.
The Consensus Statement cautions against surgery for purely cosmetic
reasons. The emphasis is instead placed on 'functional outcome'.
It acknowledges that gender assignment may be determined according to medical
and non-medical considerations:
The factors that influence gender assignment include
diagnosis, genital appearance, surgical options, [the] need for lifelong
replacement therapy, potential for fertility, views of the family, and
sometimes, circumstances relating to cultural practice.
The 2006 Consensus Statement does not prescribe the timeframe in which
gender assignment surgery should occur. It does, however, provide general guidance
on the factors that should be taken into account when determining when to
proceed with surgery. The factors vary according to the particular intersex
condition. For example, it is specified that '[v]aginal dilation should not be
undertaken before puberty.' In contrast, for 'patients with androgen
biosynthetic defects raised female, gonadectomy should be performed before
Recommendations regarding the timing of surgery can therefore depend not only
on the nature of the procedure but also on the assigned gender.
From a medical perspective, the statement draws conclusions about which
gender assignment is more appropriate for some kinds of intersex conditions. It
is asserted that 'more than 90% of patients with 46,XX CAH and all patients
with 46,XY CAIS assigned female in infancy identify as females.' Accordingly,
the statement concludes that there is medical evidence to support assigning a
female gender appearance to 'markedly virilised 46,XX infants with CAH'. The statement
provides further guidance for other kinds of intersex conditions, including 5-α-reductase (5αRD2)-deficiency, 17β-hydroxysteroid
dehydrogenase deficiencies and partial androgen insensitivity syndrome.
Reflecting the strong belief in 'normalising' sex, the likelihood of
achieving a standardised physical appearance is listed as one of the factors
for practitioners to consider in sex allocation. For example, in relation to a
person with an intersex condition associated with abnormalities of the penis (hypospadias),
the statement makes the following observation:
The magnitude and complexity of phalloplasty in adulthood
should be taken into account during the initial counselling period if
successful gender assignment depends on this procedure. At times, this may
affect the balance of gender assignment. Patients should not be given
Referring to broader 'surgical management' procedures, as opposed to
gender assignment procedures, it is noted that practitioners should 'consider
options that will facilitate the chances of fertility'.
principles for the care of infants, children and adolescents with intersex
During the inquiry, the committee's attention was drawn to the recent
development of good practice guidelines in Victoria.
The committee understands these to be the only detailed public guidelines of
their type in Australia. In February 2013, the Victorian Department of Health
issued the Decision-making principles for the care of infants, children and
adolescents with intersex conditions. The resource document, which seeks to
guide health professionals to achieve the 'best possible outcomes' for children
with intersex conditions, is based on the principles endorsed in the 2006
Consensus Statement. The Victorian Government intends that the decision-making
framework will be applied in all intersex cases in Victorian hospitals.
However, the framework is not intended to provide directives or clinical
protocols about individual cases.
While not providing directives in every case, the document does record the
government's intention that in all cases the principles will be applied
robustly, transparently and consistently.
Like the 2006 Consensus Statement, the Victorian Department of Health
has endorsed five medical management principles.
Gender assignment must be avoided before expert evaluation in
Evaluation and long-term management must be carried out in a
centre with an experienced multidisciplinary team.
All individuals should receive gender assignment.
Open communication with patients and families is essential, and
participation in decision-making is encouraged.
Patient and family concerns should be respected and addressed in
The Victorian decision-making guide expressly states that gender
assignment 'does not necessitate surgery or other medical treatment.' It also
cautions against allowing a sense of urgency to outweigh the need to gather
information to make robust, transparent and consistent decisions. It does, however,
take the position that gender assignment is 'best practice in most cases'.
The medical management principles are drawn from the 2006 Consensus
Statement. However, unlike the Consensus Statement, the principles are only one
part of a broader decision-making framework. The Victorian guide goes beyond
the 2006 Consensus Statement by endorsing a set of ethical principles, human
rights principles, principles for supporting parents and patients, and legal
principles. Along with the medical management principles, these principles
apply to decision-making about the health care of intersex infants, children
and adolescents in Victoria.
The endorsed human rights principles reflect the Victorian Charter of
Human Rights and relevant international law. The ethical principles are as
To act in the best interests of the patient, decisions should
be tested against the ethical principles developed by Gilliam, Hewitt and Warne
(2010; 2012), including:
minimise physical risk to the child
minimise psychosocial risk to the child
preserve potential for fertility
preserve or increase capacity to have satisfying sexual relations
leave options open for the future
consider parents' wishes
take into account the views of the child.
Seven principles for supporting patients and parents are outlined, which
recommend ongoing medical follow–up and psychological support for patients and
their families. The principles are:
honest and complete disclosure of the diagnosis, risks, options,
issues and treatments
sufficient time and opportunity for discussion of all options for
healthcare and a balanced review of risks and benefits
intensive support, education and counselling during the
standardised, age-appropriate resources for parents, children and
adolescents that provide education about sex and gender diversity
information about, and referral to, support groups for both
parents/families, and the patient
assistance for parents with informing their child in stages about
their condition, and with seeking their child’s consent for any medical or
ongoing follow up and referral to psychological support for
patients and their parents throughout the patient’s life.
In addition to outlining a set of decision-making principles, the framework
document also recommends hospitals develop multidisciplinary specialised
advisory groups underpinned by processes, policies and procedures to guide
clinicians on when and how to use the advisory groups. It is also contemplated
that such groups will facilitate consultation and discussion between Victorian
Victorian hospitals are also encouraged to engage with intersex support groups.
The Victorian guide acknowledges that normalising surgery is a
Most of the international debate about the healthcare of
intersex conditions has been concerned with the ethics of performing genital
surgery on infants and children. Generally, the focus of concern is not on medically
necessary treatment done to avoid physical harm that is proportionate to the
level of physical risk that the condition poses to the patient (for example,
ensuring a functioning urinary system). The focus of concern is in cases where
treatments for cosmetic effect are carried out for conditions that pose little
or no physical risk to the patient (for example, to ‘normalise’ the person’s
body to make it look more typically male or female).
Treatments where the medical imperative for intervention is
not obvious include those performed to protect against potential psychosocial
stress associated with ‘looking different’ and being known by others to look
The document does not explicitly recommend against normalising surgery
during childhood. However it makes a number of points that support great
Putting particular emphasis on the fact that assigning gender
does not necessitate surgery or other treatment;
Indicating that keeping open future options is an important
factor in considering treatment decisions; and
Indicating that delaying treatment may be in the patient's best
OII Australia argued that the Victorian decision-making guide leaves
open the possibility of non-therapeutic, purely cosmetic gender assignment
Evidence on current practice
Evidence before the committee provided some support for the general
statement that 'there is now a slower and more judicious approach to the
decision to perform sex-assignment surgery'.
However, change is uneven, and surgery of this type is still occurring in
infancy and childhood.
Commenting on international practice, APEG indicated that there are no
clear guidelines on the timing of cosmetic surgery:
International medical guidelines exist to define the level of
genital ambiguity at which surgery is indicated, however the guidelines state
that the optimal timing of surgery remains debatable. This is because there is
a lack of strong evidence to either support or refute specific recommendations
on timing. According to current consensus guidelines, surgery for the purposes
of appearance can ideally be recommended either during infancy, or later at the
time of adolescence, when the child can be involved in the decision to operate.
As the following advice from APEG highlights, there is disagreement
among the community about the time to perform gender reassignment surgery:
[T]here can be spontaneous reduction in the size of the
clitoris with adequate hormone replacement therapy, and some specialists
recommend that surgery be delayed until no further shrinkage is expected,
before considering any surgery to further reduce size. In some cases, with
adequate hormone treatment, there can be enough natural regression in size
during infancy such that surgery is not indicated any more. However, other
specialists argue that very early surgery in the first months of life is
optimal, and that there is no need to wait for any natural regression in
Cosmetic surgery continues to be performed on children who are intersex. The National
LGBTI Health Alliance cited the results of a survey of practitioners who
attended the 2011 IVth World Congress of the International Society on
Hypospadias and Disorders of Sex Development, which found that 78 per cent of
the practitioners surveyed preferred normalising surgery to be performed before
the child is two years old.
Early surgery appears to be prevalent for two of the main forms of
intersex. In a 2012 chapter surveying outcomes of treatment of intersex, Warne
notes that childhood removal of testes from women with Complete Androgen
Insensitivity Syndrome 'is still common practice'.
In 2013, presenting information about the treatment of congenital adrenal
hyperplasia, Hewitt reported research that indicated almost all Australian and
New Zealand respondents to an Australasian Paediatric Endocrine Group
recommended genital surgery in cases of virilised genitals, though not all
supported this surgery being timed to occur in infancy.
The Disorder of Sex Development multidisciplinary team at the Royal
Children's Hospital, Melbourne advised that decisions about surgical alteration
are not made rapidly, but are the subject of careful multidisciplinary
consideration. The following illustration regarding gonadectomies was provided:
In the past, a decision regarding gonadectomy may have been
made reasonably rapidly...Today, the pathway is far more careful as it is
recognised that some individuals with a DSD may want to change their gender
identity or wish to identify as indeterminate or intersex...The decision-making
process takes time and thus any decision regarding possible gonadectomy would
not be made until an informed and considered decision can be made by the person
The Melbourne multidisciplinary team did not support general
postponement of gender assignment surgeries. It argued that there may be a
place for surgery during childhood, as delay may not be appropriate. The team
defended early surgery in part on the basis of a lack of evidence of the
advantages of delay, though conceding there is no evidence in relation to
Although there is no direct evidence regarding the timing of
genital surgery in girls, there is evidence from studies on boys. These report
better self-esteem and body image, and more positive attitudes towards intimate
relationships in adolescents and young men if their genital surgery is
completed before the age of 3 years, compared to surgery in mid-childhood.
Although some people advocate leaving all genital surgery till later when the
person can consent themselves to the procedure, there are no studies to
demonstrate a comparison of outcomes with this greater delay.
The multidisciplinary team described one of the issues with delayed
action to undertake gonadectomy:
The potential difficulty with this more conservative approach
is that for some young people (e.g. those who definitely identify as female and
do not wish to retain their testes), the perceived delay in surgery and the
associated need for gonadal surveillance (with ultrasound or MRI) can be very
There was a view among intersex support groups and representative
organisations that medical practice has not materially evolved since Money's
theories were first endorsed, and that normalising surgery remains a standard
response to intersex conditions. OII Australia submitted that rationales for
normalisation surgery remain based on psychosocial theories that give primacy
to the perceived need for others to see intersex people as 'normal':
Current protocols in Australia are still based on
psychosocial adjustment: minimising family concern, and mitigating the risks of
stigmatisation due to physical difference.
The National LGBTI Health Alliance agreed, submitting that normalising
procedures are 'a standard medical practice in Australia and elsewhere today'.
What are the problems with current practice?
There is a weak evidence base for
surgery on infants or young children
Several witnesses to the inquiry argued that surgery to render genitals
'normal', or consistent with an assigned sex, was problematic and not
well-supported by evidence. Indeed, as noted above, this point appeared to be
conceded, at least in relation to females, by specialists in the field.
Intersex support organisations and representatives reported that sex assignment
surgery, particularly if conducted in infancy, causes ongoing medical
complications. As the National LGBTI Health Alliance submitted, normalising
surgeries are 'creating a sickness when there was no sickness'. Reported physical
complications include insensate genitalia, reduced sexual enjoyment,
sterilisation, scarification and osteoporosis.
Potential problems with early normalising surgery are confirmed in the
literature. As the 2006 Consensus Statement acknowledges, there is little
evidence to support the argument that early intervention provides the best
outcome for intersex children:
It is generally felt that surgery that is performed for
cosmetics reasons in the first year of life relieves parental distress and
improves attachment between the child and the parents; the systematic evidence
for this belief is lacking.
The statement acknowledges that data on long-term outcomes for children
subject to gender assignment surgery is inconclusive. The statement also
recognises that 'there are no controlled clinical trials of the efficacy of
early (<12 months
of age) versus late (in adolescence and adulthood) surgery or the efficacy of
different techniques'. It is also claimed that analysis of long-term outcomes
is difficult, 'complicated by a mixture of surgical techniques and diagnostic
categories'. Accordingly, the Consensus Statement recommends that future
studies use standardised assessment tools, be prospective in nature, and be
designed to avoid selection bias.
In evidence before the committee, the lack of data was acknowledged by
representatives of the medical community. For example, APEG observed:
There is limited evidence reporting long-term outcomes of
early surgical management for reasons of appearance. The few outcome studies
reported have conflicting results of good and poor outcomes (cosmetic, sexual
The absence of conclusive evidence was also the subject of comment by
intersex representative organisations. A Gender Agenda advised that a review of
existing studies found:
[T]here are no publications of evidence of the association
between genital surgery and improved psychosocial outcome. There is also no
evidence that surgery promotes a stable gender identity development or that
gender will develop as assigned.
OII identified an additional reason for the difficulties experienced in
obtaining data about outcomes for intersex children, submitting that gender
assignment conceals a person's intersex identity:
There is a paucity of data on the impact of surgery on
adults, and few long term studies: for example, intersex is erased from
official documentation through the assignment of a binary sex of rearing. We
have seen no long term studies within Australia.
The committee considered some of the main studies that were drawn to its
Since the 2006 Consensus Statement, there have been a few further
studies of the outcome of gender normalising and surgical practices. Some
studies of adults who have received treatment for intersex 'disorders' reveal a
high level of dissatisfaction with one or more aspects of their experience
though, as with most aspects of research in the area of intersexuality, sample
sizes tend to be small. There are two broad areas of investigation:
satisfaction with the assigned gender; and functional outcomes (such as whether
intercourse is comfortable or painful, or whether the person is satisfied with
their sexual arousal and experience).
In 2008, Crouch and others reported a study of sexual function and
genital sensitivity for intersex women with CAH.
The researchers studied 28 intersex women, 24 of whom had undergone genital
surgery, and ten controls (that is, women without CAH). The results showed
that, both on clitoral sensitivity and sexual function, the women who had
surgery reported less sensitivity, and poorer sexual function than either those
who had not had surgery, or the controls. The authors concluded that 'genital
sensitivity is impaired in areas where feminizing genital surgery had been
done', and that more attention should be paid to the concerns of recipients of
The committee was advised, however, that other studies produced different
Brinkmann and others surveyed and assessed 37 intersex people with
varying conditions, and found that:
over 60% of the participants show significant psychological
distress, despite the fact that all were treated according to the "optimal
gender policy" to avoid psychological distress which might result through
ambiguous physical appearance.
A more detailed analysis in 2009 involving the same study led the
authors to suggest the possibility:
that psychological distress, especially interpersonal
insecurities, suicidal tendencies, and self-harming behaviour, are more frequent
in [disorders of sexual development] than generally assumed...
A separate 2012 study of people with a range of forms of intersex,
including CAIS, PAIS and gonadal dysgenesis, examined patient satisfaction with
genital surgery and sexual life as adults. It found very high levels of
dissatisfaction and medical complications. Around half those subjects who
received feminising surgery were dissatisfied with the results of surgery and
with their experience of clitoral arousal. Issues with sex life, sexual
anxieties, and painful intercourse were prevalent among the group.
Studies involving a group of Melbourne-based researchers who also
contributed to the current inquiry showed more positive results in relation to
satisfaction with assigned gender. They concluded in one paper that 'cosmetic
and anatomic outcomes of surgery for ambiguous genitalia were generally good
when undertaken by pediatric surgeons with specific expertise in intersex
Despite these positive results, their survey of the literature
identified lower rates of success reported elsewhere:
A long-term outcome study of 50 patients aged 18–32 years who
had been treated in Melbourne when they were children showed that mental and
physical health outcomes were as good for most of the DSD patients as for those
in two control groups; however, there was a small minority of patients whose
gender identity as adults was a source of such profound discomfort that they
felt compelled to undergo treatment to change it. Clearly, this is unsatisfactory,
and management practices have been reviewed internationally by clinicians
looking for ways of minimising the risk of making such mistakes about gender
The main problem relates to feminising genitoplasty, which
involves the removal of phallic erectile tissues and skin that cannot be
replaced. This type of operation is considered appropriate for 46,XX girls with
congenital adrenal hyperplasia,
who rarely identify as male when they are adults if they are treated with
appropriate hormones to maintain androgen suppression from soon after birth and
However, feminising genitoplasty is much more of a problem in
patients with a Y chromosome. For example, in one study of 14 adult patients
with genetically confirmed partial androgen insensitivity who were treated at
Johns Hopkins University in the United States as children, 25% experienced
as adults, and a small number wanted to undergo sex change surgery.
Claims are sometimes made that outcomes studies may reflect outdated
and that medical treatment has changed.
The committee recognises that there have been significant developments in
surgical techniques applied to some forms of intersex.
However, for most forms of intersex, the committee was not presented with
evidence to clearly indicate that outcomes are dependent on the era of medical
procedure of the specific treatment administered, nor that those procedures
responsible for poor outcomes are no longer administered.
In some cases, these claims have been directly rebutted by other studies.
The committee accepts that an experienced specialist working in a team care
environment may achieve very good results,
but also notes the observation made by OII, that the 'skill of a particular surgeon
in one State provides no basis for a rational, national, human rights-based
approach to cosmetic genital surgeries on intersex infants'.
Many studies of intersexuality suffer from significant methodological
problems. There are issues with choosing an appropriate control group against
which to assess results. There are very few longitudinal studies following
individuals over their life course. Surveys face significant risks of the
non-respondents being different in character or outcome from those who choose
to respond, creating a biased sample. This is because it is possible that those
who have experienced adverse health or social outcomes from treatment are
particularly distrustful of medical professionals, potentially including
medical researchers, and may be less willing to subject themselves to
The committee is also aware of suggestions that those expressing
dissatisfaction with results are not representative of health care outcomes
overall. APEG stated that 'some individuals are unhappy with their childhood
treatment and have formed advocacy groups or pursued litigation',
with Warne putting the claim very bluntly, when he referred to:
the vigorous activities of patient-advocacy organizations who
have publicized their unhappiness and disagreement about current practices to
the world at large and to politicians in particular.
Another researcher in 1999 likewise suggested that concerns
were being raised by an unhappy minority.
Responding to these claims in an analysis of a debate pertaining to the
treatment of CAH, Anne Tamar-Mattis observed:
There’s a theory floating around the world of medicine that
goes like this: while it is widely known that patients with disorders of sex
development (DSD) are unhappy with the treatment they have received – cosmetic
genital surgery, unwanted hormone treatment, and humiliating genital exams top
the list – they can be safely ignored because there is actually a “silent
majority” of patients out there who are doing just fine. This is a comforting
idea. It justifies the mistakes of the past, and it allows current practice to
continue without all the discomfort of change.
Those of us who work in DSD advocacy hear the theory of the
satisfied silent majority all the time. But no one can find them...
But there is a silent majority out there in the world
of DSD treatment. And I have found them. They are the clinicians, the
researchers, the junior practitioners, the social workers, the nurses, the
psychologists who know or suspect that there is something very wrong with
current treatment models, but keep their thoughts to themselves.
Overall, there are very limited studies of the long-term outcomes of
surgery, and some of the results should be of serious concern.
Surgery has risks
The Androgen Insensitivity Syndrome Support Group Australia drew
attention to the false view that intersex persons are naturally infertile.
Given the broad range of intersex conditions, the support group noted that it
cannot be assumed that infertility is a consequence of DSD in every case. For
intersex persons whose fertility has not been affected, normalising procedures
can result in irreversible sterilisation:
Although many intersex people are naturally infertile, this
is not the case universally. Many medical interventions to intersex bodies,
particularly gonadectomy, can effectively be considered sterilization as they
limit any future utilization of healthy reproductive tissue.
Intersex support organisations and representatives reported that
normalising surgery is not a one–off process. Rather, as a statement by Gina
Wilson makes clear, the surgery can lead to a lifetime of dependency on further
That 'cure' offered by the medical establishment takes the
form of surgery often followed by more surgery and a lifetime of hormonal
reinforcement. Intersex genital mutilation (IGM) is conducted on newborn babies
when their external genitals do not look 'normal' enough to pass unambiguously
as male or female. IGM, like female genital mutilation (FGM), is surgery carried
out upon the genitals of newborn babies, infants and children for cultural or
religious reasons. Both are forms of infant genital surgery. The surgical
procedures conducted can cause irreparable damage to children.
Additional reconstructive surgery is sometimes required. As a
consequence, rather than experiencing a 'normal' adolescence, intersex
teenagers can spend their holidays recovering from additional surgeries.
Intersex representatives also commented on the irony of normalising
surgery – surgery intended to standardise appearance can result in deformity:
One of the things that they say to us is that we need to have
our gonads removed because we are different–'We want to make you look normal.'
Of course, part of the whole sterilisation thing is that you have a pretty big
surgery and scars, so they are making us different!
Accordingly, it was reported that the physical damage caused by
normalising surgery exacerbates difference and, therefore, social isolation:
To remove gonads in AIS results in two significant scars on
your pubic area that look like—I call them angry eyebrows; that is what they
look like. They are pretty obvious, especially in AIS, where you do not have
pubic hair. For a child it means when you go camping, showering or swimming with
other people, they cannot help noticing that you have two red scars in your
pubic area. They are noticeable and you know what: they are noticeable for
'Normalising' surgery on infants
and children: human rights implications
Any form of involuntary or coerced treatment, particularly where it
involves invasive and irreversible procedures, is a serious matter and raises
significant human rights concerns. In its first report on the Involuntary or
coerced sterilisation of people with disabilities in Australia, the
committee discussed the human rights implications of involuntary or coerced
treatment in the context of persons with disabilities. Similar human rights
concerns arise in relation to the issue of ‘normalising’ surgery on infants and
As a party to the key international human rights treaties, Australia has
threefold obligations under international law, namely (i) to respect –
requiring government not to interfere with or limit human rights; (ii) to
protect – requiring government to take measures to prevent third parties
from interfering with human rights; and (iii) to fulfill – requiring
government to take positive measures to fully realise human rights.
'Normalising' surgery on infants and children has the potential to
impact on a range of interrelated human rights, including the right to privacy
(which extends to the right to personal autonomy/self-determination in relation to medical treatment); the right to equality and
non-discrimination; and the prohibition against torture and other cruel,
inhuman and degrading treatment (including the prohibition against
non-consensual scientific or medical experimentation).
The right to personal autonomy
The right to privacy protects a person's right to
autonomy and personal, mental and bodily integrity in the context of medical
encompasses a person’s identity – including their sexuality, physical
identifiers including their genetic code, their health, their image, their
beliefs and convictions, bodily and psychological integrity and autonomy.
Choices about a person's own body in the context of medical interventions
therefore fall within its scope.
In her analysis, Fixing Sex, Katrina Karkazis concluded that
infant surgery leaves decision-making in the hands of third parties. While
Karkazis writes that parents and medical professionals become the 'gatekeepers'
of a child's identity and physical appearance, it is clear from her discussion
that parents often play a facilitating role to the professionals'
Because of the emphasis in the traditional protocol on rapid
gender assignment and early surgery, many parents come under pressure to make
treatment decisions quickly; and, indeed many are anxious to embark on a course
of action that they believe will protect the child from being perceived as
freakish or unable to live a 'normal' life. In the absence of rigorous
long-term studies regarding treatment outcomes for genital surgery, parents
face complex moral decisions about what is best for their child. Inextricably
tied to ideas about the child's best interest are parents' views about what
bodily parts and capabilities are required to be male or female. Parents are
thus put in the position of assessing whether their baby is appropriately and
sufficiently gendered, effectively making them gatekeepers, along with
clinicians, responsible for making irreversible and embodied decisions about
the standards of maleness or femaleness.
It was argued that third-party decision-making about a person's gender
is contrary to that person's right to self-determination. Gender assignment
surgeries without the person's consent were characterised as 'well-intentioned
but medically unsound violations of basic human rights'.
Concerns about human rights protection echo the views of the Australian
Human Rights Commission in its 2009 report Surgery on intersex infants and
human rights. The Commission concluded that surgery on intersex infants is
a human rights issue, affecting the child's 'fundamental rights of non-discrimination
and equity before the law'.
The Commission advised that Australia's obligations under the Convention on the
Rights of the Child have the effect that 'the child who is capable of forming
their own views has the right to express those views in all matters affecting
them...and for those views to be given due weight'. The Commission further
concluded that this right should be exercised in accordance with the child's
age and maturity. Accordingly, the Commission held that:
[i]n situations where surgery is not a medical necessity, it
might be more appropriate to delay gender-related surgery until the child is at
an age where their views concerning their gender identity and surgery can be
taken into account.
The former Tasmanian Commissioner for Children, Paul Mason, has also
concluded that gender assignment without the person's consent contravenes
internationally recognised human rights. Commenting in 2009, the Commissioner
drew particular attention to Article 12 of the Convention on the Rights of the
States Parties shall assure to the child who is capable of
forming his or her own views the right to express those views freely in all
matters affecting the child, the views of the child being given due weight in
accordance with the age and maturity of the child.
In addition, the former Commissioner also highlighted Australia's
obligations under Article 6 of the Convention, which states that 'States
Parties shall ensure to the maximum extent possible the survival and development
of the child'.
On the basis of the rights contained in the Convention, the Commissioner
concluded that '[a]ll children have the right to grow up and choose how their
private parts should look'.
Non-consensual surgery, it was argued, interferes with this right:
It is submitted that in respect of all children, unnecessary
circumcision and surgery on intersex babies should have the same human rights
status as FGM, which has been criminalised in all States and Territories as a
discriminatory practice in violation of the Convention on the Elimination of
All Forms of Discrimination Against Women (CEDAW).
It is submitted that Australia's failure to eradicate
non-consensual and medically unnecessary genital alteration of infant boys and
of babies with ambiguous genitalia (intersex) for their families' traditional
cultural and religious reasons amounts to a breach of children's human rights.
Several witnesses considered non-consensual gender assignment surgery to
be analogous to FGM, which is legally prohibited.
It was further argued that non-consensual gender assignment surgery is
contrary to the right to freedom of religion and expression, and the directive
in Article 3 of the Convention that decisions about children are to be in the
child's best interests:
Children are accorded the right to freedom of religion and to
freedom of expression. Consequently a decision by parents to circumcise a male
child to conform to their religious beliefs or select a gender assignment for
an intersex child before the child can choose their religion or express their
innate sexuality amounts to a violation of the child’s right to freedom of
religion and expression.
To the extent non-therapeutic circumcision on healthy boys or
intersex surgery on infants could be conceptualised as practices based on
societal norms and prejudices about what is/is not 'normal', these practices
arguably amount to a breach of the 'best interests' principle enshrined in
UNCROC Article 3.
From the evidence provided, it is clear that similar views have been
expressed within the international community. OII referred to evidence provided
by Advocates for Informed Choice to the Inter-American Commission on Human
Rights for its inquiry into the treatment of intersex persons. As cited by OII,
Advocates for Informed Choice argued:
[d]octors are also aware that there is usually no medical
necessity for genital-normalising surgery, and offer social justifications,
believing that the abuse they commit is necessary to prevent future
discrimination against children with bodies that challenge the norm. However,
just as it is a violation of the child's human rights to address parental
discomfort through surgery on the child, it is a violation to address societal
discomfort by the same means...The unavoidable pain of surgery and the high risk
of severe, lifelong physical and mental suffering from loss of sexual sensation
and function; pain caused by scarring, infertility, castration and violation of
body integrity; and irreversible sex assignment to the wrong sex would never be
accepted by doctors or parents if the child did not have an intersex body. The
belief that such high a risk is acceptable with an intersex condition...drives
these human rights violations.
OII also provided to the committee a copy of the 2005 report of the
Human Rights Commission of the City and County of San Francisco into the 'issue
of "normalising" medical interventions being performed on intersex
infants and children'. That commission concluded:
It is unethical to disregard a child's intrinsic human rights
to privacy, dignity, autonomy, and physical integrity by altering genitals
through irreversible surgeries for purely psychosocial and aesthetic
rationales. It is wrong to deprive a person of the right to determine their
sexual experience and identity.
Similarly, reporting in November 2012, the Swiss National Advisory
Commission on Biomedical Ethics held that there was no room for third-party
decision-making for intersex children with the capacity to give or withhold
As soon as the child attains capacity, it must consent to
medical treatment itself, since such cases involve the exercise of highly
personal rights. Parents should not have a right to veto a decision made by a
child which has already obtained capacity. People have capacity if they can
understand the purpose, appropriateness and effects of a given course of action
and are also in a position to act only of their own free will in accordance
with rational judgement and to withstand pressure exerted by third parties
within normal limits.
Prohibition against torture and other cruel, inhuman and
There is growing recognition at the international level that medical interventions
of an invasive and irreversible nature, absent a therapeutic purpose, may
constitute torture or ill-treatment when administered without the free and
informed consent of the person concerned.
Noting that members of sexual minorities may be disproportionately
subjected to torture and other forms of ill-treatment because they fail to
conform to socially constructed gender expectations, the United Nations
Special Rapporteur on Torture has expressed concern at evidence of
non-consensual gender assignment surgery:
There is an abundance of accounts and testimonies of...hormone
therapy and genital–normalising surgeries under the guise of so-called
'reparative therapies'. These procedures are rarely medically necessary, can
cause scarring, loss of sexual sensation, pain, incontinence and lifelong
depression and have also been criticised as being unscientific, potentially
harmful and contributing to stigma.
The Special Rapporteur recommended the repeal of all laws and healthcare
practices that discriminate against lesbian, gay, bisexual, transgender and
The Special Rapporteur calls upon all States to repeal any
law allowing intrusive and irreversible treatments, including forced
genital-normalizing surgery, involuntary sterilization, unethical experimentation,
medical display, 'reparative therapies' or 'conversion therapies', when
enforced or administered without the free and informed consent of the person
concerned. He also calls upon them to outlaw forced or coerced sterilization in
all circumstances and provide special protection to individuals belonging to
Most human rights may be subject to reasonable limits. Limitations
of rights must pursue a legitimate objective and there must be a reasonable
relationship of proportionality between the means employed and the objective
sought to be realised. Proportionality requires that the limitation be
necessary and rationally connected to the objective; be the least restrictive
in order to accomplish the objective; and not have a disproportionately severe
effect on the person to whom it applies.
In considering whether a limitation on a right is proportionate, relevant
whether there were other less restrictive ways to achieve the
whether there are effective safeguards or controls over the measures,
including provision of due process rights and access to independent review; and
the extent of the interference with human rights – the greater
the interference the less likely it will be considered proportionate.
The evidence suggests that a human rights consistent framework for 'normalising
surgery' where it involves irreversible and invasive procedures must
necessarily operate from a presumption in favour of maintaining the status quo
for as long as possible except where such a presumption would conflict with the child's best interests. A model that confers
rights on third parties, through substitute decision making, before it
guarantees the rights of the child, is likely to be a disproportionate
limitation of the child’s right to autonomy/self-determination.
It is not clear what kind of
'normal' is the objective of surgery
One of the difficulties that is seldom discussed is how to establish
what constitutes 'normal', particularly in relation to what genitals 'should'
look like. OII expressed concern about 'the absence of standard objective
measures for cosmetic perceptions of "normal" female genitals'.
The Androgen Insensitivity Syndrome Support Group Australia held a similar view
of current medical practice:
It is our experience as a peer led support group that current
medical protocol is to overly pathologise intersex bodies and seek to use
surgical, hormonal and psycho-social methods to anatomically ‘normalise’
intersex bodies so that they more closely confirm with accepted standards of either
male or female physiological stereotypes. Our anecdotal experiences are backed
up by an ever-widening pool of research into contemporary medical practices and
their effects on people with intersex conditions.
APEG advised that the idea of 'adequate' penis size was crucial in
medical decisions around intersex:
[i]n the past, it was thought that adequate penis size was
the main determinant of whether an infant with ambiguous genitalia should be
assigned male or female at birth.
What little research exists regarding 'adequate' or 'normal' genitals,
particularly for women, raises some disturbing questions. A British team of
Jillian Lloyd and others measured variations in the dimensions of female
genitalia in a small group of 50 women aged between 18 and 50 who did not have
any medical condition affecting their genitals. Even in this very small sample,
there was enormous variation in the size of genitalia, with the largest
clitorises 700 per cent longer, and over 300 per cent wider, than the smallest;
the largest labia minora 500 per cent longer, and 700 per cent wider, than the
smallest; and with the longest vagina twice the length of the shortest.
Despite this range, a recent reference work on surgery on intersex patients in
infancy refers simply to creating 'a clitoris that is in the right position and
of the right size', without any elaboration, or discussion of what that size
The committee received no information indicating whether or not this natural
variation in genital size and shape is taken account of in areas such as the
application of the Prader scale, or how medical specialists learn about the
diversity of appearance of genitals or how they define 'normal' in their
Studies such as that by Lloyd and others indicate that there is enormous
natural variation in the anatomy of sex. However, this is not necessarily
reflected in the medical response to that variety. A group of Dutch researchers
surveyed 164 physicians regarding their views about the desirable size of a woman's
labia minora, by assessing their 'willingness to refer for, or perform, a labia
minora reduction'. The doctors were divided into three groups: plastic
surgeons, general practitioners, and gynaecologists, and shown pictures of
female genitalia with different sized labia. The researchers found that all the
doctors regarded smaller labia minora as ideal, and male doctors were more
likely to recommend surgery than female, regardless of specialisation. The P
measures in the following quote indicate that the results were statistically
Ninety percent of all physicians believe, to a certain
extent, that a vulva with very small labia minora represents society's ideal
(2-5 on the Likert scale). More plastic surgeons regarded the picture with the
largest labia minora as distasteful and unnatural, compared with general
practitioners and gynecologists (P < 0.01), and regarded such a woman as a
candidate for a labia minora reduction procedure (P < 0.001). Irrespective
of the woman's labia minora size and the absence of physical complaints,
plastic surgeons were significantly more open to performing a labia minora
reduction procedure than gynaecologists (P < 0.001). Male physicians were
more inclined to opt for a surgical reduction procedure than their female
colleagues (P < 0.01).
Both the Dutch and British studies raised the question of whether the
increasing availability of pornography, containing 'idealised, highly selective
images of the female genital anatomy', is influencing both professional and societal
expectations around genital appearance, and encouraging people to seek surgery.
There is no consensus in key areas
of medical practice
In the mid-2000s researchers led by David Diamond surveyed paediatric
urologists on appropriate clinical management of some intersex cases. The
results make for sobering reading, and show both a lack of consensus, and the
influence on gender assignment of the medical practitioner's age and
They overwhelmingly favoured female gender assignment for
females even if they were extensively masculinized (Prader V) considering that
preservation of female fertility was of foremost importance. For a case
involving a male with cloacal exstrophy
70% of respondents recommended male and 30% a female gender assignment. The
factor they thought most important in choosing a male identity was the
likelihood of brain imprinting by androgens. Those preferring a female gender
assignment thought the most important factor to consider was the chance of
surgical success. They were less concerned with male fertility. The likelihood
of choosing a male or female gender assignment was strongly influenced by
respondent characteristics: younger practitioners seemed more willing to attend
to brain potential while those older seemed more concerned with surgical
The committee recognises that doctors are under enormous pressure and
working in very difficult circumstances, and that parents too feel social
pressures that they may communicate to physicians. Many specialists are trained
to undertake sex assignment surgery, but few are trained to assist in the
process of actually assessing what that sex should be. The title of a 2004
journal article expresses the conundrum these health professionals experience:
'Possible determinants of sexual identity: how to make the least bad choice in
children with ambiguous genitalia'.
Similarly, writing in a more recent article about intersex, Professor Garry
One of my heroes in pediatric endocrinology, Dr. Jud Van Wyk,
once told me "It doesn't matter what you decide about DSD, you will be
wrong!" His comment reflected the raging controversy about the ethics of
decision making that was emerging at the time. Looked at another way, it might
be interpreted as meaning that there is no "right" answer, no perfect
outcome for the child who has been born with ambiguous genitalia. 
Ms Zoe Brain commented that in her experience 'the medical profession
has a very uneven standard of knowledge in a very specialised area of intersex
situations'. Writing from her perspective as a member of the intersex community
who has worked with medical and psychology students to promote knowledge of
intersex issues, Ms Brain questioned the rationales for current medical
Much of what is in standard medical texts can best be
described charitably as unevidenced, and uncharitably as folklore and accepted
wisdom with no factual basis. Given the immense amount of knowledge medical
practitioners have to acquire, this is perhaps understandable, and no fault should
be attached to healthcare professionals who follow what they've been taught.
Dr Jacqueline Hewitt performed a survey for APEG, of specialists' views
about treatment of CAH in Australia and New Zealand. APEG provided a
preliminary overview of the results to the committee.
It highlights a great diversity of opinions amongst doctors, and some extreme
geographical variation in medical practice. The survey asked a question about
when surgery should be conducted on females with CAH who show different degrees
of virilisation of their genitals, based on the Prader scale (see chapter 1).
For women with low to moderate virilisation (Prader 2), the doctors were evenly
divided between those who recommended no surgery at all, and those who
suggested it occur in adolescence, with a few suggesting infancy. For moderate
virilisation (Prader 3), there was an even split between those favouring
infancy and those suggesting waiting until adolescence. Even for the most
virilised of females (Prader 5), a significant minority did not support infant
Amongst those who supported early genital surgery, most favoured doing it
between 6 and 12 months of age. But when the researchers analysed outliers,
they found very strong regional variations. Those favouring surgery at less
than 6 months were all from New Zealand, Queensland or outside the region,
while those at the other extreme, recommending no infant surgery in any
circumstances, were all from New South Wales.
This considerable variation in views existed primarily within one medical
specialisation (endocrinology), in one geographical region (Oceania),
discussing just one type of intersex, and this certainly explains why most of
the respondents favoured the development of clinical guidelines to guide
The research by Hewitt gives detailed insight to the broader issue,
recognised in the 2006 Consensus Statement and elsewhere,
that there is no medical consensus around the conduct of normalising surgery.
Given the lack of consensus, the Intersex Society of North America's
advice to parents was to query the necessity of cosmetic surgery, and that
providing a supportive environment for the child was the most important thing:
If your surgeon wants to do a surgery to change how your
child looks, pause and consider waiting. What we know about people who grew up
with "ambiguous genitalia" tells us on average they do well! You may
understandably worry that your child will be emotionally hurt by having
something other than average-looking genitals, but the evidence suggests your
child won’t be, especially if you’re open, honest, accepting, and supportive.
Surgeries may leave your child with diminished health, diminished sexual
sensation, scarring, a poor cosmetic outcome, and an unintended message that
your child needed to be "fixed" to be accepted by you. So consider
waiting and letting your child decide whether to take the risks. You may
discover your child is fine with the way your child is, especially if you let
your child know you are.
Making intersex invisible?
As OII commented, normalisation surgery is more than physical
reconstruction. The surgery is intended to deconstruct an intersex physiology
and, in turn, construct an identity that conforms with stereotypical male and
female gender categories:
[I]ntersex people are regarded by medicine as having an
impairment – a disorder of sex development – which affects perceptions of our
realness as men or women. Intersex bodies do not meet social expectations.
Cultural, familial and medical attitudes govern to which sex we are assigned.
Surgical and other interventions are made to erase intersex difference.
Normalising surgery presupposes that there is an abnormality in need of
correction. As the Androgen Insensitivity Syndrome Support Group Australia
argued, intersex people 'are treated like damaged goods'. Perhaps unsurprisingly,
the committee received evidence of normalising surgery having social and
psychological ramifications. These include social stigma, referred to as a
'legacy of shame', difficulties within the child's family unit, adult personal
and psychological distress, sexual anxieties, and uncertainty about personal
and gender identity.
Overall, the conclusion that intersex persons require 'normalising' was
strongly disputed by the intersex community:
The implication that there are psychosocial risks associated
with looking different and that these are greater than the risks associated
with social outcomes; appears to be presumed without evidential support.
Neither OII Australia, nor are the intersex community or advocacy organisations
that we have spoken with (such as the US Advocates for Informed Choice), are
aware of any follow-up studies on people who have avoided surgery as a primary
or comparison group.
The committee notes that the emphasis in recent guidelines on functional
outcomes rather than on cosmetic results
provides the potential for clinical practice to move away from rendering
Suggestions for reform and for ensuring best practice
The argument that normalising surgery is required to protect the child
from discrimination was strongly contested. Rather than altering the child, it
was submitted that societal attitudes are in need of reform. OII submitted that
the appropriate course of action is to expose discrimination rather than to
mask physical difference:
Looking different is a human characteristic, and different
ethnic appearance is often associated with discrimination and poor health
outcomes. We don't require people to modify their appearance as a result; we
try to tackle the discrimination.
OII recommended a focus on family counselling rather than surgical
options, and supported changes to the basis on which medical management of
intersex is approached:
Our recommended principles for medical interventions are the
- Medical intervention should not assume crisis in our
difference, nor normalisation as a goal.
- Medical, and in particular surgical, interventions must
have a clear ethical basis, supported by evidence of long term benefit.
- Data must be recorded on intersex births, assignments of
sex of rearing, and of surgical interventions.
- Medical interventions should not be based on psychosocial
adjustment or genital appearance.
- Medical intervention should be deferred wherever possible
until the patient is able to freely give full and informed consent; this is
known as “Gillick competence”.
- Necessary medical intervention on minors should preserve
the potential for different life paths and identities until the patient is old
enough to consent.
- The framework for medical intervention should not
infantilise intersex, failing to recognise that we become adults, or that we
have health needs as adults.
- The framework for medical intervention must not
pathologise intersex through the use of stigmatising language.
- Medical protocols must mandate continual dialogue with
Some other submitters endorsed this approach.
The submission from APEG:
acknowledges the contention in this area, and recommends that
until further evidence becomes available, surgery for the purposes of
appearance should only occur if consistent with international medical
guidelines on degree of ambiguity, and that in terms of timing, parents should
be thoroughly counselled about the options of very early surgery, delay until
later in infancy or delay until the child can be involved themselves in the
decision to operate.
Regarding how cases should be considered, APEG strongly endorsed the
approach set out in the 2006 Consensus Statement in favour of specialist
Informal multidisciplinary management groups have been
established in Australia, however unlike those established overseas, none have
received discrete health funding, and they often do not have participation of
all the specialists listed above. At present there is no formal process
requiring expert multidisciplinary management team review of children with DSD,
and thus not all patients receive review by such an expert group.
APEG supports the funding of formal specialist
multidisciplinary DSD management groups as a priority, and recommend that all
cases of DSD should be discussed with a specialist DSD management group.
Other recommendations from APEG and the Disorder of Sex Development
multidisciplinary team at Royal Children's Hospital Melbourne related to
research, rather than to changes in current practice.
Ensuring the best treatment
The published literature and submissions indicate that, where surgical
intervention takes place, two overlapping features are of great importance.
These are the need for assessment and support to be provided by full
multidisciplinary teams; and if surgery is undertaken, for it to be done by
experienced specialists to the highest standard and informed by the latest
research and practice.
As the committee noted earlier, there is considerable variation in the
outcomes of genital surgery reported in the medical literature. The committee
is aware that the populations who were included in the studies vary in where
they were operated on and what kinds of surgery they received. For example, in
a group of eighteen women who had clitoroplasty, Nordenskjöld and others found
treatment administered by ten surgeons at four hospitals. In contrast, an
Australian study by Lean and others dealt with a patient population the
majority of which had been seen by one surgeon.
When considering the issue of surgical background, they found:
those who had their clitoroplasty done by nonspecialized
surgeons showed poorer outcomes, with absence of clitoris, small clitoris, or
large clitoris identified at examination... Of the 32 patients examined, 21 (66%)
had acceptable overall outcomes (<2 abnormalities on examination) and 11
(34%) had poor outcomes (>2 abnormalities).When these overall outcomes were
analyzed based on the institution where the initial surgery was done, patients
who had their initial surgery done at [Royal Children's Hospital] (18/22) had
better overall outcomes (P <.05) than those operated on elsewhere (3/10).
The paper also reported research by others indicating that 'poor results
related to surgeons' lack of experience' and concluded that 'the consistent
message for achieving good outcomes is the need for a specialized surgeon and
and others considered the outcomes of treatment of 62 women with CAH.
Discussing the experience and consequences of surgery, they observed that women
had been subjected to many different kinds of procedures, some of which were no
longer used, and that in some cases the researchers 'had difficulties
interpreting the operative procedure from the charts because it was not always
Given the outcomes the women experienced, the researchers concluded:
our data confirm that feminizing surgery should be
restrictive and calls for specialization of the surgeons that are to perform
this type of surgery... Indications for surgery should be restrictive given the
risk for diminished sensitivity of the clitoris. Given the results from this
study and having met these women, we, as others before us, strongly argue that
the medical, surgical, and psychological treatment be centralized to
All of this evidence is consistent with the position taken in the 2006
Consensus Statement, and endorsed in the recent Victorian guidelines, that care
should take place in multidisciplinary teams. However, when a group of
researchers surveyed the extent to which the Consensus Statement
recommendations had been implemented in Europe, the move toward dedicated
multidisciplinary teams was found to be incomplete. The survey, responded to by
60 of the 77 medical centres invited to take part, indicated that around one
third had what was defined as an 'ideal team' containing all required
specialities including psychology, social work and medical ethics. Two thirds
were missing one or more of the specialities. It was also the case that over
two-fifths of the centres did not hold clinics 'designated solely for DSD
The multidisciplinary team based in Melbourne endorsed the need for
specialist team-based care,
as did the body representing many of the key specialists, APEG. The committee
is aware that the team in Melbourne includes at least an endocrinologist,
surgeon, endocrine social worker, mental health professional and gynaecologist,
as well as involving a clinical ethics committee that has medical ethics
The committee was not advised of the range or depth of skills in other
Australian locations undertaking treatment of intersex children. As APEG
pointed out, 'at present there is no formal process requiring expert
multidisciplinary management team review of children with DSD', and such teams
are not directly funded.
There is nothing easy about decision-making that will irrevocably affect
children's future lives. It presents great challenges, some of which the
treatment of intersex people historically has failed to meet. Some intersex
people have been subject to decision-making similar in nature to that examined
in other inquiries conducted by this committee. The similarities include: a
goal of resolving issues as soon as possible after birth; concealment of
medical procedures from parents or patients; the subsequent loss or
inaccessibility of medical records; primacy of medical professional
decision-making over other sources of expertise; and the entrenchment in
professional practice of theories that may have a limited and contested
Policies based on these features subsequently are recognised as compromising important
ethical principles, violating human rights and sometimes causing long-term
personal and social damage.
The evidence received during this inquiry indicates that many of these
practices (such as concealing diagnoses, or withholding records) are rejected
by all those involved in intersex medical treatment. In some other areas, such
as intervention based on limited scientific evidence and the emphasis on
resolving issues at birth, improvements are still needed to protect intersex
people and their rights.
The lack of evidence to support intersex medical decision-making is a
source of concern, and the committee returns to the issue of research in the
Regarding normalising surgery on intersex people, the committee
Normalising appearance goes hand in hand with the stigmatisation
of difference. Care needs to be exercised that medical treatment of intersex is
not premised on, and contributing to, the stigma and perceived undesirability
of people appearing different from one another.
There is frequent reference to 'psychosocial' reasons to conduct
normalising surgery. To the extent that this refers to facilitating parental
acceptance and bonding, the child's avoidance of harassment or teasing, and the
child's body self-image, there is great danger of this being a circular
argument that avoids the central issues. Those issues include reducing parental
anxiety, and ensuring social awareness and acceptance of diversity such as
intersex. Surgery is unlikely to be an appropriate response to these kinds of
Human rights considerations are important in this area, and any
decision-making around medical treatment of intersex children must take them
Irreversible medical treatment, particularly surgery, should only
be performed on people who are unable to give consent if there is a
health-related need to undertake that surgery, and that need cannot be as
effectively met later, when that person can consent to surgery.
Medical practice has moved, and appears to be continuing to move,
in the right direction, by applying increasing caution to normalising treatment
An evidence base supporting early surgery for some individuals
does exist, but it is small, contested, and it is not yet clear what the
factors are that determine success (noting also that 'success' is itself a
All major care decisions and case management should take place in
a multidisciplinary team setting, and surgery should only be undertaken by
highly trained specialists with experience in intersex cases.
The proposals put forward by Organisation Intersex International have
merit, and are consistent with the committee's conclusions. The committee
believes that a protocol covering 'normalising' surgery should be developed,
and then adhered to in all cases of intersex children. Such a guideline should
be consistent with Organisational Intersex International's recommendations,
particularly 4, 5 and 6.
The committee recommends that all medical treatment of intersex people
take place under guidelines that ensure treatment is managed by multidisciplinary
teams within a human rights framework. The guidelines should favour deferral of
normalising treatment until the person can give fully informed consent, and
seek to minimise surgical intervention on infants undertaken for primarily
The next chapter discusses the important issues of how such guidelines
should be developed, who should be involved, and how decision-making for
intersex children should be supported.
The committee agrees with APEG that medical care should be undertaken in
multidisciplinary teams that include psychological, social work, and ethical
expertise, and which work in a human rights framework. The committee supports
the provision of some direct funding to team care, to ensure that:
Intersex people receive multidisciplinary team care across
Australia, not only in the one or two locations where it appears to be fully or
The teams are comprehensive in their membership, particularly
with respect to psychological and social support, and ethics; and
The teams have sufficient support and recognition to ensure
things like high-quality record-keeping and research capacity (referred to in
the final chapter).
The committee recommends that the Commonwealth government provide
funding to ensure that multidisciplinary teams are established for intersex
medical care that have dedicated coordination, record-keeping and research
support capacity, and comprehensive membership from the various medical and
non-medical specialisms. All intersex people should have access to a
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