Milton Diamonda,*, Jameson Garlandb
Evidence regarding cosmetic and
medically unnecessary surgery on infants
a University of Hawaii, John A. Burns School of
Medicine, Pacific Center for Sex and Society, 1960 East-West Road,
Honolulu, HI 96822, USA
b Uppsala University, Faculty of Law, Uppsala, Sweden
* Corresponding author. Tel.: +1 808 956 7400; fax: +1 808 956 9722
Originally published in: Journal of Pediatric Urology (2014) 10, 2-7
Received 10 July 2013; accepted 24 October 2013; available online 20 November 2013
© 2013 Published by Elsevier Ltd on behalf of Journal of Pediatric Urology Company
here by permission of the author.
Infants; Surgery; DSD; Gender-variant; Genitalia; Moratorium
The Journal of Pediatric Urology has recently
published several articles from the Annecy (France) Working Party on
DSD. We question several of the presented findings and recommendations.
In two key articles summarizing their review, the authors concluded that
identified studies are not representative and suffer from
methodological weaknesses, such that they “lack the necessary detail to
base further recommendations”. In a third article, the Working Party
reported that the science supporting early surgery is “scanty”, and that
“no studies” support the belief that gender variant children require
early genital surgery. Nevertheless, the Working Party warned that
without long-term research, “if no effort is made, we will be left, in
the next generation, to continue making the same judgment, based on
‘experience’ and ‘expert opinion’”. None of the studies cited in the
articles support such assertions as we read them. We maintain that
reviewed evidence suggests a moratorium on early surgical intervention
is imperative for children with differences in sex development, and that
the best ethical and scientific considerations require that gender
surgery should be delayed until the child can consent. We further
present evidence that UN and case law presently under way in the USA
support such a moratorium.
The Journal of Pediatric Urology has recently
published (vol. 8, no. 6) several articles from the Annecy (France)
Working Party on DSD. We significantly question several of the findings
and recommendations as presented.
The Working Party reviewed a selection of studies from 1974 to
2012 that purport to assess the validity of surgery for children with
differences of sex development. Based on that review, the Working Party
concluded that the selected studies suffer from methodological
weaknesses and “lack the necessary detail to base further
recommendations” on care for individual child patients1,2.
The Working Party further reported that the science supporting early
surgery is “scanty”, that critical long-term studies are “scarce” and
unlikely to emerge, and, most significantly, that “no studies” support
the belief that gender variant children require early genital surgery
for societally favored gender development3.
Nevertheless, the Working Party warned that without long-term research,
“if no effort is made, we will be left, in the next generation, to
continue making the same judgment, based on ‘experience’ and ‘expert
opinion’”2, leaving patients
subjected to surgical decisions on a “case-by-case basis with
individual surgeons relying on their own professional expertise and
Taken together, these articles represent candid and unequivocal
statements from some of the world’s best-known practitioners of surgery
on gender variant children. They conclude, without qualification, that
current surgical practices on children with differences of sex
development lack sufficient scientific support. The implication of these
findings is that the research that was in existence when early surgical
intervention had started to become the standard of care could not
reasonably have been interpreted as clear scientific validation of such
surgery, and that representations in studies once heralded as that
validation, particularly those from the Johns Hopkins University
Hospital4-6, were wrong. As
early as 1965, the theory that sex neutrality in newborns provided a
basis for early gender surgery on children had been directly,
scientifically challenged, along with a recommendation for “extensive
clinical reappraisal”40. Remarkably, these latter findings were not seriously examined again until the end of the 20th century7-9.
To say the least, then, the Working Party’s review was needed long ago.
Indeed, the U.S. National Institute of Health (NIH) reported in 2006
that there is a “crisis of clinical management” for children with
atypical genitals precisely because “there are insufficient data to
guide the clinician and family in sex assignment” and “optimal
application of surgery and its timing remain unclear”10.
In this light, we must register our strong disagreement with
the Party’s assertions that scientific uncertainty precludes detailed
recommendations for present and future clinicians. On the contrary, the
Party’s review of evidence resoundingly supports one recommendation –
that any medically unnecessary cosmetic surgery should be delayed until
the patient can consent to all of the risks involved. This is the only
scientifically sound and ethical way to ensure that the surgery
coincides with each child’s gender identity and interests in how his or
her body might appear. Indeed, in 2006, when the NIH declined to support
a moratorium on early surgery, it did so with the assumption that new
research would produce findings that could guide clinicians10. At that time, it was already nearly a decade after a clinical call for a moratorium on early surgery was first made7. (The first call for a moratorium on cosmetic infant surgery for ambiguous genitalia was in a 1998 print publication, the Journal of Clinical Ethics7.
That same year, at an invitational presentation to the American Academy
of Pediatrics, Section on Urology, a direct appeal was made to cease
such surgery as the procedure lacked validation8.
The following year, in 1999, a conference was specifically called for
Dallas, Texas (USA) to reappraise the issue of pediatric gender
assignment and reassignment and how to manage infant ambiguous genitalia11.
At that conference the American Academy of Pediatrics Section on
Urology and the Society for Fetal Urology were said to have formed
committees that were to work on developing a registry of how such cases
were managed and study long- term outcomes11.)
We maintain that a moratorium on early surgical intervention is
imperative for children with differences of sex development, and that
the best ethical and scientific considerations require that any gender
surgery should be delayed until each child can consent to it.
The Working Party has indicated that “most” former patients who
have been surveyed also favored early cosmetic surgery. None of the
studies cited in the articles support such assertions, even as a
statistical matter. For example, Wisniewski et al. reported that a
minority of respondents to their survey gave the most common response to
the question of the time for surgery as “during infancy”12.
A majority of patients gave a wide array of responses on questions of
surgical timing or declined to respond at all. We doubt if an option of
“never” was offered to respondents in connection with the disclosure
that doing so would have allowed full retention of erotic sensitivity.
(We think it necessary that all questionnaires are included with any
survey study so the meanings of the presented findings can be properly
evaluated. If that is not done then at least each potential answer
should be provided with the exact wording of the question evaluated.)
Similarly, Warne et al. based their findings on a 53% participation rate
to a mailed survey, attributing the substantial lack of response to
possible patient dissatisfaction with surgery or poor questionnaire
design13. Fagerholm et al.
based their review on another mailed survey that also recorded a 53%
response rate. Many of their respondents had their first surgery from
age four to their late teens. The authors reported that their
respondents “prefer” early surgery despite finding a risk of impaired
sensitivity in all genital surgery. They further found that 23% of
patients were dissatisfied with their surgical outcomes14.
Given the thousands of patients who have not been surveyed, we think
the negative responses and lack of patient participation in these
surveys speaks volumes about the clinical significance of their
Most notably, of the four studies cited by the authors as
favoring early surgery, the significant work of Nordenström et al. made
no such sweeping claim15.
On the contrary, nearly all the patients assessed by that study said
that genital sensitivity was negatively affected by surgery. The
authors’ findings grew out of a project that had earlier concluded that
the surveyed patients were less than satisfied with genital function and
appearance “whether operated or not”16.
Nordenström et al. thus concluded that gender identity and quality of
life considerations were likely as important to patients as mere
surgical outcome statistics15.
The authors expressly recommended that surgery should be “restrictive”,
and warned that their data demonstrated that clinicians’ perceptions of
surgical outcomes differed significantly from patients’ perspectives on
their own bodies. These findings cast substantial doubt on the ability
of physicians to fully represent patients’ wishes without patient input
and, thus, weigh against early surgical intervention.
The characterization of these and other studies as favoring
early surgery is not only at odds with the Working Party’s overall
findings, but also with several of the Party members’ own studies, which
are not given equal space in the Working Party’s reports. For example,
Houk and Lee have reviewed cases of highly virilized 46 XX, CAH children
raised as males without surgery, reporting that many of these patients
are satisfied as males17.
Acknowledging that the Chicago Consensus Statement was based on
tentative findings and the weakest form of scientific evidence, Hoch and
Lee urged “bold” reconsideration of presumptively feminizing the
studied children, instead recommending to parents that their children
could be raised as males, with full disclosure of the risk of gender
dysphoria and physical injuries from early surgical feminization. While
this proposal had been made before (with counseling for all involved)18,
Hoch and Lee noted that traditional standards of care during past
decades had rigidly excluded such alternatives. Today, the authors
explained, “the proposal for less invasive surgery also aligns well with
the message heard from patient advocate groups that propose limited
surgery until the patient is old enough to consent. The recent Consensus
Statement makes it clear that all gender reassignments must be patient
Similarly, Sarah Creighton’s works have repeatedly concluded
that evidence shows high risk involved in making such surgical decisions
for a child without the child’s consent. In 2001 she wrote, “Adult
patients are unhappy and feel mutilated and damaged by surgery performed
on them as young children, however worthy the clinician’s motives”20.
In 2006 she wrote, “Early infant vaginoplasty may be justified if there
were good evidence it produced better long-term anatomical, cosmetic
and functional outcomes than later delayed surgery. However, this does
not seem to be the case... - Many adult intersex people with first-hand
experience of infant genital surgery vehemently condemn this approach”21.
Along with Christine Minto, Creighton wrote, “Most vaginal surgery can
be deferred until after adolescence unless haematocolpos is a risk...
Children with mild clitoromegaly should have surgery deferred until they
are old enough to be involved in the decision”22. Creighton and Minto further expressed their feelings with an editorial in the British Medical Journal entitled “Most vaginal surgery in childhood should be deferred”23.
And with Lih-Mei Liao and others, Creighton wrote that “asymptomatic
adult women with CAIS” are increasingly choosing not to remove their
gonads when given the choice, in light of “very limited evidence based
on which clinicians can advise ... [about] gonadectomy”24.
We have serious doubts that clinicians will be open to these
concerns and adjust their practices in light of the evidence without
strong formal leadership urging them to do so. In 2010, the Endocrine
Society wrote, “There are no randomized controlled studies of either the
best age or the best methods for feminizing surgery”, “there are no
data comparing psychosexual health in girls and women who have undergone
early and late surgery” and “[t]here is no evidence at this time that
either early surgery or late surgery better preserves sexual function”25.
And yet, on the very pages it documented this lack of evidence, the
Society continued, “We suggest that for severely virilized females,
clitoral and perineal reconstruction be considered in infancy” and that
vaginoplasty “should be simultaneously done at an early age”. The
Society not only recommended early surgery but also advocated studying
only early surgery. That recommendation is not evidence-based medicine26
but is, rather, the purposeful favor of one practice, in the hope of
gathering data that will support that practice, without any reasonable
basis for believing that such data will emerge.
It is undeniably appropriate that the Working Party now
questions the role that physicians may play in encouraging patients to
choose surgery. The Working Party has advised that clinicians should be
open to the fact that patients might prefer to sacrifice sexual
sensitivity in order to “look normal”2. For males with micropenis, the Working Party has asked whether clinicians should encourage patients to transition to female2.
These are the very problems that clinicians struggled with generations
ago before surgery became “preemptive”. But from the patients’
perspectives, the questions of whether they should receive deference in
regard to their own surgeries are transparently bypassed by performing
such surgery on very young children. It should be obvious that the
questions the Working Party now raises are meaningful to patients who
have been given a chance to grow up and become sexual beings with a
gender identity, so that they have the needed perspective about how they
wish their genitals to be in ways that suit them for the rest of their
More than two decades ago, Suzanne Kessler recruited a large
random population of young adults to objectively test that very
hypothesis27. On the
question of surgical reduction of a clitoris between 1.0 and 2.5 cm in
length, 93% of women would not have wanted their parents to agree to
surgery unless the condition were life-threatening, even if it resulted
in loss of orgasm or pleasurable sensitivity. And when given a choice as
to when they might have wanted such surgery done, almost half would
have wanted to be able to make their own decisions. Most of the women
would not have wanted vaginal surgery even if the condition made them
uncomfortable or limited their ability to have intercourse. Males were
asked the comparable question of whether they would have wanted surgery
for hypospadias. A third of the males would not have wanted the surgery
even if it kept them from standing up to urinate, and three-quarters
would not have wanted the surgery if it meant the loss of pleasurable
sensitivity. Almost none of the men would have wanted sex reassignment
for micropenis or other reason if it meant loss of orgasm or reduction
in pleasurable sensitivity27. Today, the Working Party1,2, like the Chicago Consensus before it19,
has finally questioned much clitoral reduction surgery and feminization
of males with micropenis – not because patients with atypical sex
development were asked – but because injuries to untold numbers of
patients proved it was unnecessary and harmful, at the patients’
The knowing continuation of unproven surgery on children in the
search for evidence is experimentation, and should not be done in
unmonitored, uncontrolled clinical practice. Indeed, the continuation of
early surgical intervention on children without their consent has only
increased the uncertainty surrounding the current standards of care, not
the reverse. As a result, objective scientific research cannot continue
in this field without a moratorium on early surgery, precisely because
favoritism for early surgery seems to have closed many
clinician-researchers’ minds to the scientific possibility – indeed, the
reality – that children with differences in sex development can thrive
without surgery. Decades ago, although unpublished, one well-known
Harvard dissertation documented the health and stability of such
individuals unaltered by surgery28.
This was even at a time dominated by dogmatic and archaic notions of
gender and sexuality. The Working Party’s findings now make abundantly
clear that the model of surgery-in-a-state-of-uncertainty is not
reliable, particularly for cosmetic surgery for which no evidence of
medical need exists, as cosmetic surgery is an imperfect mix of art and
science. As Schober, another Working Party member, has written, a
“reliable, successful genitoplasty procedure that can be performed early
in childhood for either feminization or masculinization has not yet
The priority of research, therefore, should be a commitment to
delay surgery and determine how patient participation in surgical
decisions can be incorporated into practice. The Working Party has
recommended a multidisciplinary registry of surgeries30, along with a systematic recording of long-term outcomes of treatment from birth to adulthood2.
They have, however, recommended that these steps be taken prospectively
and without a moratorium in place. A registry already exists in Europe,
has already been proposed for the USA, and should be available
everywhere surgery is performed31.
But we cannot support the notion that early surgeries continue in the
midst of systematic documentation while we await evaluation of long-term
outcomes. Too many patients will be negatively affected in the interim.
Even if all practitioners were to commit today to delay all surgery
until each patient consents, we would have more than enough patients who
have undergone early surgery to follow prospectively, while
practitioners focus their energy on documenting patient histories that
have been lost to follow-up. Several participants in the Working Party
already have more than enough cases from their own practices that they
could review and register, if not publish. The combined results would
rapidly displace any claim of lack of data in securing the best
evidentiary bases to medical practice relative to infant cosmetic
In the past, legal authorities have been slow to take a stance
in this field. That is now changing. The Colombian Constitutional Court –
the first in the world to require the consent of many young children to
genital cosmetic surgery32 – has requested a consult with one of us (MD) with regard to future management of intersex identity33. The German Ethics Council has proposed increased legal controls of genital and gonadal surgery for all children34.
The UN “Special Rapporteur for Torture and Other Cruel, Inhuman,
Degrading Treatment” has called for all nations to reform laws in order
to prevent medically unnecessary and nonconsensual genital surgery35.
Most recently, the Parliamentary Assembly of the Council of Europe has
called on all Member States to take measures regarding “early childhood
medical interventions in the case of intersexual children” to “ensure
that no-one is subjected to unnecessary medical or surgical treatment
that is cosmetic rather than vital for health during infancy or
Perhaps most significantly, in recently filed litigation in the
USA, a federal court has already held that nonconsensual genital and
gonadal surgery may violate the constitutional rights of affected
children37. The facts of that case38 are compelling:
“Despite the fact that M.C.’s condition did not threaten his
health, the defendant doctors planned and decided to perform a
‘feminizing-genitoplasty’ on the sixteen-month-old M.C. During this
surgery, [the surgeon, Dr. X] cut off M.C.’s phallus to reduce it to the
size of a clitoris, removed one of M.C.’s testicles, excised all
testicular tissue from M.C.’s second gonad, and constructed labia for
M.C. The surgery eliminated M.C.’s potential to procreate as a male and
caused a significant and permanent impairment of sexual function....
The defendant doctors knew that sex assignment surgeries on
infants with conditions like M.C.’s pose a significant risk of imposing a
gender that is ultimately rejected by the patient. Indeed, one of the
doctor defendants who performed the surgery on M.C. had previously
published an article in a medical journal wherein he recognized that
‘carrying out a feminizing-genitoplasty on an infant who might
eventually identify herself as a boy would be catastrophic.’
Since a young age, M.C. has shown strong signs of developing a
male gender. He is currently living as a boy… Defendants’ decision to
perform irreversible, invasive, and painful sex assignment surgery was
unnecessary to M.C.’s medical well-being.”
M.C.’s legal case is the first of its kind, but is likely not
to be the last. Nevertheless, physicians with knowledge of the lack of
sufficient evidence to justify early surgical intervention can avoid
harm to patients – and thus avoid litigation or sanctions – by allowing
patients to decide, on their own, if they wish gender surgery or not.
The Working Party’s findings are, therefore, important to read
in detail precisely because they document that there is no evidentiary
basis to continue early sex assignment and genital surgery. The
inescapable conclusion of those findings is that a moratorium on such
surgery is overdue as both a scientific and medical matter. Patients’
human rights must be seen as compatible with the best ethical
considerations for medical practice7,9,39.
We continue to support the clinical guidelines for medical management
of differences in sex development in children, as presented in 199741.
We urge, in the absence of imminent dangers to patients’ lives or
health, that gender variant conditions must be managed with the least
invasive means available and respect for each patient’s autonomy.
1 Lee P, Schober J,
Nordenström A, Hoebeke P, Houk C, Looijenga L, et al. Review of recent
outcome data of disorders of sex development (DSD): emphasis on surgical
and sexual outcomes. J Ped Urol 2012;8:611-5.
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18 Diamond M,
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29 Schober JM.
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32 See in the Matter
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33 Letter from Constitutional Court of Columbia to Milton Diamond, on file.
34 Deutscher Ethikrat. Intersexuality:opinion (English trans. 2013): 2012. pp. 163-5.
35 Méndez Juan E.
Report of the special rapporteur on torture and other cruel, inhuman or
degrading treatment or punishment to the U.N. General Assembly
(A/HRC/22/53). See also, http://www.ohchr.org/Documents/HRBodies/HRCouncil/RegularSession/Session22/A.HRC.22.53_English.pdf; Feb. 1, 2013.
36 Parliamentary Assembly of the Council of Europe, Resolution 1952. Children’s right to physical integrity. Available from: http://assembly.coe.int/nw/xml/XRef/Xref-XML2HTML-en.asp?fileid=20174&lang =en; 2013.
37 M.C. v. Aaronson, Civ. No. 2:13-cv-01303-DCN (D.S.C., Order dated Aug. 29, 2013).
38 M.C. v. Aaronson, Civ. No. 2:13-cv-01303-DCN (D.S.C., filed Apr. 14, 2013) (Complaint).
39 Wiesemann C,
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40 Diamond M. A critical evaluation of the ontogeny of human sexual behavior. Q Rev Biol 1965;40:147-75.
41 Diamond M,
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individuals with ambiguous genitalia. Arch Pediatr Adolesc Med