ISNA's Amicus Brief on Intersex Genital Surgery

7 February 1998

Mr. Rodrigo Uprimny

Corte Constitucional

Calle 72 No 7-96

Bogotá

COLOMBIA SOUTH AMERICA

Dear Mr. Uprimny,

Thank you for providing the opportunity to comment on this case. As I understand
the case, physicians have asked for the Court to either approve performing
genital surgery on a six year old intersexed child, or to wait and allow
the child to make any decisions about surgery herself, when she is old enough
to evaluate risks and benefits. Apparently the surgery contemplated is clitoral
reduction, vaginoplasty (to create or deepen a vagina), or both. In a previous
case regarding an emasculated boy, the Court determined that all choices
involving sexual identity must be made directly by the person, and not by
the parents.

We argue, in keeping with the Court's previous determination, that only
the child has the right to make decisions regarding her sexual identity
and cosmetic genital surgery. To impose surgery on her would subject her
to an unnecessary risk of irreversible harm and violate her human rights.

During the past several years, there has been an explosion of new scholarly
work which considers medical management of intersex children, and the surrounding
psychosocial issues. Based upon that work, a growing consensus of surgeons,
psychologists, psychiatrists, and ethicists argue against early genital
surgery on intersex children (Diamond 1996; Diamond and Sigmundson 1997b;
Dreger 1997a; Dreger 1998 forthcoming-a; Drescher 1997; Kessler 1998 forthcoming;
Schober 1998). It would be a pity for the Court to create a precedent insulating
doctors from any liability for harm caused by performing non-consensual
genital surgery on children precisely at the moment when scholarly opinion
is changing. It would be even more ironic for the Court at this moment to
reverse its previous opinion, and negate the right of a child to make for
herself all decisions regarding her sexual identity.

Given the fact that genital surgery is not medically necessary, that it
is irreversible and potentially harmful, that there is growing controversy
among medical intersex specialists, and that the child can always choose
surgery if she wishes when she is old enough to give informed consent, to
impose surgery now would violate the first principle of medicine: "Primum,
non nocerum" (First, do no harm).

Please refer also to enclosed Declarations from Cheryl Chase (Director of
the Intersex Society), Justine Schober M.D. (pediatric urological surgeon),
Alice Dreger Ph.D. (narrative ethicist), and Lisset Barcellos Cardenas (a
Peruvian woman subjected to nonconsensual genital surgery at age 12). All
of these argue that cosmetic genital surgery should never be performed without
the express informed consent of the patient. Also enclosed is a letter in
the original Spanish from Ms. Barcellos to her doctor in Lima, insisting
that this practice is harmful, unethical, and must be stopped.

1. There is no medical reason to reduce the size of a large clitoris.
Large clitorises do not cause illness or pain. The sole motivation for the
surgery is the unproven belief that it may enhance psychological well-being.
There is no medical reason to create or deepen a vagina in a pre-pubescent
child. The sole motivation for such surgery is the unproven belief that
it may ease parental discomfort now or that the decision would be traumatic
for the patient to make later, so the surgery should be performed before
she is able to participate in the decision.

2. The surgery is irreversible. Tissue removed from the clitoris
can never be restored; scarring produced by surgery can never be undone.
Setting potential and speculative "psychological" benefits aside,
there no medical advantage or benefit to performing surgery now as opposed
to later, when the child can make her own choice and when her gender identity
is clearly established. "Surgery makes parents and doctors comfortable,
but counseling makes people comfortable too, and it is not irreversible"
(Schober 1998, p20).

There are, in fact, clear medical benefits to delaying the surgery. When
she is grown, her genitals will be larger and thus easier for a surgeon
to work on. One reason for poor surgical outcomes may be that scar tissue
is negatively affected by the changes in size and shape that accompany normal
growth and pubertal development; surgery performed after puberty would avoid
that risk. It is likely that surgical techniques will have improved by the
time she has grown; waiting will allow her to benefit from advances in technology.

There are many documented cases of people with her history who lived as
adult women and were happy to keep their large clitoris intact, in some
cases actually refusing surgery when it was offered (Fausto-Sterling 1993;
Young 1937).

There is clear documentation that a significant fraction of children with
her specific medical condition and history develop a male gender identity,
and live as men during adulthood. If she lives as a man, she will be grateful
that surgery was not performed without her consent.

Physicians in this case have asserted that the child can never live as a
man, because her penis is never going to be sexually functional. But sexual
function may mean different things to different people. The boy in the previous
case, who was accidentally emasculated, chose to live as a man even though
he had lost his penis. The men investigated in (Reilly and Woodhouse 1989)
were able to have satisfying lives as men, with no impairment of sexual
function, with small penises that would be judged "inadequate"
according to the medical protocols used on intersex children. A small penis
is capable of providing sexual arousal, genital pleasure, and orgasm. The
video tape "I am what I feel to be" (Fama Film A.G. 1997) presents
interviews in Spanish with a number of people who were born as male pseudo
hermaphrodites, raised female, and later changed to live as men. Both they
and their partners describe their lives as sexually fulfilling, in spite
of penises so small that they lived as girls until puberty (Fama Film A.G.
1997).

3. There is considerable evidence that genital surgery can cause harm,
including such physical harm as scarring, chronic pain, chronic irritation,
reduction of sexual sensation, and psychological harm. Indeed, apart from
the harm specific to genital surgery, surgery is never without risk.

4. No significant data has been collected on long term outcomes. The
belief that these surgeries provide any benefit at all is speculative and
unexamined. Given the clear risk of harm, the Court is obligated to protect
the child's human rights by declining to approve the surgery.

**5. The very fact that the physicians in this case hesitate to perform
surgery before operating indicates that they are aware that the surgery
is risky and may cause immediate or future harm.

Surgeons argue that genital surgeries must be performed on intersex children
in order to save them from feeling different** from other children, or
being marginalized by society. But many children grow up with physical differences
which may cause them to be marginalized by society, yet we do not advocate
using plastic surgery to eliminate all physical differences. For instance,
children of racial minorities are often marginalized, teased, and even subject
to violence. Yet few would condone using non-consensual plastic surgery
during infancy to eliminate racial characteristics.

Prejudice against people with unusual genitals is culturally determined.
Some cultures have high regard for people with intersex genitals (Herdt
1994; Roscoe 1987). As even Dr. Maria New, a pediatric endocrinologist who
advocates early genital surgery, concedes, our own culture was much less
prejudiced before medical intervention began. [During the European Middle
Ages and Renaissance,] "Hermaphrodites were integrated quite forthrightly
into the social fabric" (New and Kitzinger 1993, p10).

But some surgeons who advocate early genital surgery for intersex infants
might consider surgical elimination of racial characteristics potentially
acceptable. Dr. Kenneth Glassberg, a surgeon who heads the Urology Section
of the American Academy of Pediatrics, was interviewed on the national television
news show NBC Dateline. He said that it was unrealistic to ask people to
be accepting of genital difference, because many people are unaccepting
of racial difference (Dateline 1997). Yet the law addresses the problem
of racism by trying to mitigate the power of racists to harm members of
racial minorities, rather than by trying to eliminate the physical characteristics
which mark members of racial minorities.

Likewise, in this case, if there is intolerance of physical difference,
then the intolerance should not be addressed by using medically unnecessary,
irreversible, potentially harmful plastic surgery to try to hide the physical
difference without the patient's consent. This is particularly true for
a physical difference that is not visible to others in the course of normal
social interaction.

7. There is good evidence that adults would not choose clitoral surgery
for themselves. Psychologist Dr. Suzanne Kessler has documented this
by surveying college students (Kessler 1997). There are many adult intersex
women who express regret and anger that genital surgery was imposed on them
as children.

8. Worldwide medical thinking about surgical management of intersexuality
has been strongly influenced by a case in which a boy whose penis was accidentally
destroyed during circumcision, and who after being surgically reassigned
and raised female, was reported to have had a successful adjustment. However,
it is now known that, like the previous case of accidental emasculation
which the Court is considering, the female reassignment was a disaster (Diamond
and Sigmundson 1997a). The patient now lives once again as a man, and reconsideration
of this case is causing experts to assert that early genital surgery requires
the informed consent of the patient (1997b; Diamond and Sigmundson 1997b;
Dreger 1998 forthcoming-a). "I recommend that genital reconstruction
be delayed until the individual is competent to decide for himself or herself
how this should best be fashioned" (Diamond 1996). "This damage
[due to surgery] may be something a patient is willing to risk, but that
is a choice he/she should be able to make for him/herself" (Fausto-Sterling
and Laurent 1994, p10).

9. A safer alternative is clearly available, and is endorsed by credible
experts.

Sex researcher Milton Diamond of the University of Hawaii Medical School
and psychiatrist Keith Sigmundson of the University of British Columbia,
based upon their research of intersex management, provide clear recommendations
for how doctors can best serve intersex children. They recommend that the
parents' emotional difficulties about their child's intersexuality be treated
by providing counseling for the parents, that ongoing counseling and honest
information be provided to the intersex child in age-appropriate fashion
as she grows, and that early genital surgery be avoided because it is irreversible
and potentially harmful. "[The parents] desire as to sex of assignment
is secondary. The child remains the patient." "Most intersex conditions
can remain without any surgery at all. A woman with a phallus can enjoy
her hypertrophied clitoris and so can her partner. Women with [intersex
conditions] who have smaller-than-usual vaginas can be advised to use pressure
dilation to fashion one to facilitate coitus; a woman with [an intersex
condition] likewise can enjoy a large clitoris." "As the child
matures there must be opportunity for private counseling sessions ... the
counseling should ideally be done by those trained in sexual/gender/intersex
matters" (Diamond and Sigmundson 1997b) .

Pediatric urology surgeon Dr. Justine Schober, in her review of clitoral
reduction and vaginoplasty, concludes that "Surgery must be based on
truthful disclosure and support decision-making by parents and patient.
. . . Our ethical duty as surgeons is to do no harm and to serve the best
interests of the patient" (Schober 1998).

Narrative ethicist Dr. Alice Dreger recommends that intersex patients be
allowed to choose surgery only with full informed consent of the patient,
and that counseling and peer support be made available to parents, family,
and patient (Dreger 1997b).

Given the fact that genital surgery is not medically necessary, that
it is irreversible and potentially harmful, that there is growing controversy
among medical intersex specialists, and that the child can always choose
surgery later if she wishes, to impose surgery now would violate the first
principle of medicine: "Primum, non nocerum" (First, do no
harm).
Many of the factors which determined the Court's decision in the case
of the emasculated boy apply in exactly the same way in the present case.
Just as in that case, there is no urgency to perform the surgery
as evidenced by the fact that three years have now passed since the diagnosis
and without surgery. Just as in that case, the child is unable to give
the informed consent which is necessary before such an important and
life-altering decision can be made for her. Just as in the previous case,
there is **no proof that this surgery would provide any benefit at all.
BOTH THE NUREMBERG CODE AND BASIC PRINCIPLES OF HUMAN RIGHTS LAW PROHIBIT
SUBJECTING A CHILD TO INVOLUNTARY, IRREVERSIBLE, AND MEDICALLY UNNECESSARY
GENITAL SURGERIES.**

The sole purpose of these surgeries is to enhance the long-term psychological
well-being of the patient. Yet there is no evidence that they do enhance
the long-term psychological well-being of the patient, there is no data
which assures that they preserve sexual sensitivity and orgasmic function,
and considerable data implies that they may actually harm the long-term
psychological well-being of the patient. Therefore, although these surgeries
have been performed for many years, with numerous refinements of technique,
and are considered by many surgeons to be standard practice, in pragmatic
terms they should be considered experimental techniques which must not be
imposed without the patient's full informed consent.

The Charter and the Judgment of the International Military Tribunal (IMT),
collectively titled the Nuremberg Code, carry the weight of binding international
law. See History of the United Nations War Crimes Commission and the Development
of the Laws of War (1948) and Affirmation of the Principles of International
Law Recognized by the Charter of the Nuremberg Tribunal, 1946-1947 U.N.Y.B.
54, U.N. Sales No. 1947.I.18. The very first trials held by the IMT at Nuremberg
concerned the use of medical practices on unwilling subjects. The medical
trials at Nuremberg in 1947 deeply impressed upon the world that medical
intervention on unconsenting human subjects is morally and legally repugnant.

The Tribunal classified the commission of experimental medical practices
without the consent of the patient both as war crimes and as crimes against
humanity. See History of the United Nations War Crimes Commission and the
Development of the Laws of War 333-334 (1948). The first principle of the
Nuremberg Code provides the patient/subject with the right of informed consent:
"The voluntary consent of the human subject is absolutely essential.
This means that the peson involved should have legal capacity to give consent;
should be so situtated as to be able to exercise free power of choice, without
the intervention of any element of force, fraud, deceit, duress, over-reaching,
or other ulterior form of constraint of coercion; and should have sufficient
knowledge and comprehension of the elements of the subject matter involved
as to enable him to make an understanding and enlightened decision."
2 Trials of War Criminals Before the Nuremberg Military Tribunals under
Control Council Law No. 10, at 181-82 (1949). See also the Helsinki Declaration,
adopted by the World Medical Association in 1964 (recognizing the principle
of informed consent and the right to be free from involuntary medical intervention.)

The prohibition on involuntary medical intervention and the requirement
of informed consent are absolute; the Nuremberg Code governs therapeutic
research that is intended to directly benefit or provide effective medical
therapy for the research subjects, as well as nontherapeutic research concerned
with the discovery of data. (See previous citation.)

The Nuremberg Code prohibits involuntary surgical procedures designed to
alter the genitals of a six year old child for purely esthetic as opposed
to medically necessary reasons. As discussed in more detail in the preceding
sections, these surgeries are plainly experimental: (1) They are not medically
necessary to alleviate pain or any physiological dysfunction. (2) There
is no medical consensus that these procedures are advisable or beneficial.
On the contrary, there is growing concern over the efficacy and ethics of
these procedures among medical experts in many fields. (3) There are no
outcome studies to support the hypothesis that these painful, invasive,
and irreversible surgical procedures result in any psychosocial benefit
to the child or enhance the child's well-being in any way. Conversely, an
increasing number of adults who were forced to undergo these procedures
as children are coming forward to report profound physical and psychological
harm, including pain, scarring, urological problems, loss of sexual sensation
and functioning, and severe emotional trauma. (See Declaration of Lisset
Barcellos Cardenas.)

The fundamental human right to be free of involuntary medical experimentation
is especially clear and compelling under the circumstances of this case,
which involves a six year old child who is incapable of providing informed
consent. Although parents have the right to consent to medical treatments
on behalf of a minor child under ordinary circumstances, this right does
not apply (1) when the medical treatment is not necessary to alleviate illness
or pain; (2) when the only rationale for the treatment is speculative and
purely psychosocial, i.e., to alleviate the possibility of social stigma
by physically altering a child's genitals to more closely conform to a cultural
stereotype or ideal; (3) when the procedures involved are irreversible,
painful, and may result in profound physical and/or emotional harm; and
(4) where the irreversible outcome of the procedures will deprive the child
of her right to determine her own sexual identity when she is old enough
to choose.

It is repugnant and contrary to a child's basic human rights to allow a
parent to consent to medically unnecessary genital surgery for the purpose
of dictating the child's future gender identity or of altering the child's
body to conform to an idealized cultural notion of "normal" genital
appearance. This principle has been established in the analogous context
of female genital mutilation, where a wide variety of human rights authorities
and organizations have determined that involuntary genital surgery performed
on female children violates basic human rights to bodily integrity and personal
dignity and autonomy. See Amnesty International, Women's Rights are Human
Rights (1995).

Many human rights bodies have condemned female genital mutilation, defined
as the removal of all or part of the clitoris, inner labia, or outer labia.
"Feminizing genital surgery" reduces the size of the clitoris
by removing parts of the clitoris. (An earlier surgical technique which
buried the clitoris has been abandoned because it results in pain upon genital
arousal.) Clitoral reduction surgery is thus clearly covered by the definition
of female genital mutilation. Female genital mutilation has been condemned
by the United Nations Commission on Human Rights, UNICEF, the World Medical
Association, the World Health Organization, the 1993 United Nations World
Conference on Human Rights, and numerous non-governmental organizations.
See especially the Minority Rights Group International, Female Genital Mutilation:
Proposals for Change (1992): "While an adult woman is quite free to
submit herself to a ritual or tradition, a child has no formed judgment
and does not consent, but simply undergoes the operation while she is totally
vulnerable."

There is no guarantee that the child will have a female gender identity
as an adult. As discussed above, a significant fraction of children with
her specific medical condition and history have a male gender identity as
adults. If the child grows up to have a male gender identity, then the surgeries
that the doctors seek to perform will have been a terrible mistake. Moreover,
even if her adult gender identity is female, there is no guarantee that
she will not regret any genital surgeries that were performed without her
consent as a child especially given the uncertain outcome of current surgical
techniques. Given the deeply personal and irreversible nature of genital
surgeries, the child herself is the only person who has the right to weigh
the risks and to decide what kind of genital alterations, if any, she would
like to undergo.

Parents have considerable legal control over their children, but they do
not have the right to disregard the child's intrinsic human rights to privacy,
dignity, autonomy, and physical integrity by altering a child's genitals
through irreversible surgeries based on an unproven and controversial psychosocial
rationale. See, for example, the American Convention on Human Rights, Article
1 (stating that "every human being" is entitled to the rights
and freedoms recognized in the Convention); Article 5 (recognizing the right
to "physical, mental, and moral integrity"); Article 11 (recognizing
the right to privacy); and Article 19 (stating that "every minor child
has the right to the measures of protection required by his condition as
a minor on the part of his family, society, and the state"). See, for
example,

United Nations Convention on the Rights of the Child (signed by
Colombia 26 January 1990, ratified 28 January 1991), Article 19 (requiring
all states "to protect the child from all forms of physical or mental
violence, injury or abuse, neglect or negligent treatment, maltreatment
or exploitation . . . while in the care of parent(s), legal guardian(s)
or any other person who has the care of the child"); and Article 37
(requiring all states to ensure that "no child shall be subjected to
torture or other cruel, inhuman or degrading treatment").

Summary

Therefore, we urge the Court not to approve the surgery, as a violation
of the child's human rights as previously ruled by this Court and as guaranteed
by international law, and specifically not to indemnify physicians against
liability for what they obviously regard as a questionable procedure with
a significant likelihood of resulting in regret, anger, and motivation to
seek legal redress as the patient grows up and is able to take legal action
on her own behalf.

Yours Truly,

Cheryl Chase

Executive Director, ISNA

PS: You specifically asked for a copy of the article "The Five Sexes,"
by Dr. Anne Fausto-Sterling. I have enclosed that article, but I would like
to emphasize that, though the article is titled "Five Sexes,"
neither Dr. Fausto-Sterling nor I nor ISNA is suggesting that there are
actually five sexes. Dr. Fausto-Sterling and ISNA support the recommendations
of (Diamond and Sigmundson 1997b). In the current case, those recommendations
indicate that the child should continue to be raised as a girl, but that
no genital surgery be done unless at her own initiative and with her informed
consent.

Appendix A

Feminizing Genital Surgery is Medically Unnecessary**

"Our needs and the needs of the parents to have a presentable child
can be satisfied. We argue that surgery in an infant maximizes a child's
social adjustment and acceptance by the family. But do we truly realize
and promote the best interest of the adult patient in terms of psychosocial
outcomes? This knowledge is still obscure and much remains to be discovered"
(Schober 1998, p19).

"The only indication for performing this surgery [clitoral reduction]
has been to improve the body image of these children so that they feel `more
normal'" (Edgerton 1993).

"Scientific dogma has held fast to the assumption that without medical
care hermaphrodites are doomed to a life of misery. Yet there are few empirical
studies to back up that assumption, and some of the same research gathered
to build a case for medical treatment contradicts it" (Fausto-Sterling
1993).

"The major justification for early surgery is the belief that children
will suffer terrible psychological damage if they and those around them
are not crystal clear about which sex they belong to. Surgically altering
ambiguous genitalia is seen as an important component of clarifying the
situation initially for family and friends, and as the child becomes conscious
of his or her surroundings, for the child as well" (Fausto-Sterling
and Laurent 1994, p8).

Hopkins surgeons justify early genital surgery because it "relieves
parental anxiety about the child with relatives and friends" (Oesterling,
Gearhart, and Jeffs 1987, p1081).

"For a small infant, the initial objective is to feminize the baby
to make it acceptable to the parents and family" (Hendren and Atala
1995, p94).

"Although gender assignment by genital surgery reassures adults, it
does not necessarily require surgery, based on anecdotal reports of untreated
patients" (Drescher 1997).

**Appendix B

Long Term Outcomes of Feminizing Genital Surgery are Unknown**

These surgeries have been widely practiced since the late 1950s. During
that time there has been a disturbing lack of follow-up. Because it is not
known whether these surgeries enhance psychological well-being, which is
their sole legitimate purpose, these surgeries must be considered experimental.

In her forthcoming review of feminizing genital surgeries, pediatric urological
surgeon Dr. Justine Schober notes that, "The psychosocial long-term
outcomes represent the most necessary information to determine if we are
successful in treating intersexual patients. However, in conditions other
than congenital adrenal hyperplasia, outcomes are generally unavailable"
(Schober 1998, p20).

In a forthcoming book, Dr. Suzanne Kessler, professor of Psychology at the
State University of New York at Purchase, presents results from her ten
year investigation of medical management of intersexuality. She notes that
"Surprisingly, in spite of the thousands of genital operations performed
every year, there are no meta-analyses from within the medical community
on levels of success." "Even recent reports are susceptible to
a criticism about vagueness: The clitoroplasty is a `relatively simple procedure
that gave very good cosmetic results . . . and quite satisfactory results.'
The reader searches in vain for any assessment by which that was determined."
"In none of the follow-up studies is there any indication that a criterion
for success includes the intersexed adult's reflection on his or her surgery"
(Kessler 1998 forthcoming, p106-7).

Dr. William Reiner, who switched in mid-career from urological surgeon to
pediatric psychiatrist, notes that "Past decisions about gender identity
and sex reassignment when genitalia are greatly abnormal have by necessity
occurred in a relative vacuum because of inadequate scientific data"
(Reiner 1997a, p224).

Brown University Professor of Medicine Dr. Anne Fausto-Sterling, in her
review of every case study located (in English, French, and German) on feminizing
genital surgeries from the 1950s through 1994, concludes that "these
standard treatment procedures are not based in careful clinical analysis"(Fausto-Sterling
and Laurent 1994, p1).

"Long term results of operations that eliminate erectile tissue [that
is, clitoral reduction surgery] are yet to be systematically evaluated"
(Newman, Randolph, and Parson 1992).

Pediatric urologist Dr. David Thomas of the University of Leeds, addressing
the American Academy of Pediatrics in late 1996, noted that very few studies
have been done to gauge the long-term results of early feminizing surgery,
and the psychological issues "are poorly researched and understood"
(1997a).

Hopkins Pediatric urological surgeon Robert Jeffs, reacting to picketers
demonstrating against early genital surgeries at a 1996 Boston meeting of
the American Academy of Pediatrics, conceded to a journalist that he has
no way of knowing what happens to patients after he performs surgery on
them. "Whether they are silent and happy or silent and unhappy, I don't
know" (Barry 1996).

"Although these procedures have been performed for decades, no controlled
studies have compared the adaptations of children who had surgery to those
who did not. Anecdotal reports [that is, reports of former patients including
intersex activists] carry much weight in an area in which data on long-term
outcomes are sparse" (Drescher 1997).

The very fact that, in the current case, physicians hesitate to proceed
without the approval of the Court, is evidence that they consider the procedure
risky and likely to motivate the patient to later litigation.

**Appendix C

Feminizing Genital Surgery Can Cause Harm**

There is a wealth of evidence that these surgeries can cause profound physical
and emotional harm.

See the attached Declaration of Lisset Barcellos Cardenas, which describes
reduced sexual sensation, chronic irritation and bleeding, and abnormal
appearance after cosmetic genital surgery imposed without her consent in
Lima Peru in approximately 1981. Ms. Barcellos would be happy to address
the Court, in her native Spanish, on the ways in which surgery has decreased
her quality of life and her belief that these surgeries should never be
imposed on unconsenting children.

Dr. Anne Fausto-Sterling documents scarring, pain, multiple surgeries, and
patient or parental refusal of additional surgeries as evidence that surgery
does actual harm (Fausto-Sterling and Laurent 1994,p5).

Angela Moreno, who was subjected to modern clitoroplasty by experienced
surgeons in 1985, recounts that the surgery destroyed her orgasmic function
(Chase 1997, p12).

"Surgical reduction of an enlarged clitoris can at times damage sensation
and thus reduce orgasmic potential and genital pleasure and, like ablation
of the testes, is irreversible" (Reiner 1997b, p1045).

"Aside from reducing potential adult genital sensitivity, [clitoral
reductions] neglect the significance of any behavioral or psychological
predisposition toward the individual's own preferred sexual identity or
gender roles" (Diamond 1996, p143).

Sex therapist Dr. H. Martin Malin discusses patients who had been subjected
to early genital surgeries. "[their conditions, such as micropenis
or clitoral hypertrophy] were not life-threatening or seriously debilitating.
. . . [T]hey were told that they had vaginoplasties or clitorectomies because
of the serious psychological consequences they would have suffered if surgery
had not been done. But the surgeries had been performed and they were reporting
long-standing psychological distress" quoted in (Schober 1998).

"[S]urgery not only risked problems in psychological adjustment, but
also can permanently damage the individual's ability to achieve orgasmic
sexual function. This damage may be something a patient is willing to risk,
but that is a choice he/she should be able to make for him/herself"
(Fausto-Sterling and Laurent 1994, p10).

Hopkins surgeons Oesterling, Gearhart, et al have recently acknowledged
in the Journal of Urology that the most modern clitoral surgery "does
not guarantee normal adult sexual function" (Chase 1996).

**Appendix D

Women can be well adjusted with large clitorises**

There is no evidence that these surgeries are required for healthy psychosocial
development. Indeed, there are many counterexamples, of people who lived
or are living happily without surgery.

Historian Alice Dreger has documented many male pseudo hermaphrodites who
lived happily as women during the 19th century with atypical genitals intact
(Dreger 1998 forthcoming-b).

Anne Fausto-Sterling documents 70 cases of children who grew up with ambiguous
genitalia, most of whom seem to have developed ways of coping with their
anatomical difference (Fausto-Sterling and Laurent 1994).

Hopkins surgeon Hugh Hampton Young documents a number of women with large
clitorises who were sexually active and who rejected his offers of surgical
correction (Fausto-Sterling 1993; Young 1937).

The video Hermaphrodites Speak! contains an interview (at 24:35 on the tape)
with Hida Viloria, a young woman who discusses in a video interview how
happy she is to have been able to keep her large clitoris intact (ISNA 1997).

Eli Nevada also discusses her relief at having escaped genital surgery (Nevada
1995).

"Despite a large clitoris [this patient] does not wish any [surgical]
modifications to be made" (Patil and Hixson 1992).

**Appendix E

Some male intersexuals raised female switch to male sex role**

There is evidence that some male pseudo-hermaphrodites, even if raised female,
even if subjected to genital surgery, and in spite of having an "inadequate"
penis, will change sex role during adolescence or early adulthood, living
as men rather than as women.

Money found that three (10%) of 23 patients who were male pseudo-hermaphrodites
raised female switched to living as men as adults (Money, Devore, and Norman
1986). Dr. Howard Devore, a co-author of this study, is a clinical psychotherapist
with extensive experience in assisting intersexual patients and parents
of intersexual children. Dr. Devore is an outspoken opponent of early genital
surgery and a member of ISNA's advisory board.

"In fact, present data is increasing that despite great care in rearing
these [male pseudo hermaphrodites] as females, some, or perhaps many of
them, have strong male tendencies or may even change their assigned sex
when they reach 12 to 14 years of age" (Reiner 1997a, p224). Dr. Reiner
is engaged in a prospective investigation of fifteen male pseudo hermaphrodites
assigned and raised female, with early genital surgery. To date, two out
of the seven who have reached adolescence have declared themselves male.
The other eight are too young yet for any assessment (1997b). Reiner reports
a similar case, without prospective investigation, in (Reiner 1996).

Even female pseudo-hermaphrodites assigned and reared female, with early
genital surgery, are considerably likely to switch to living as men as adults
(Meyer-Bahlburg et al. 1996).

**Appendix F

Men can be well adjusted with small penises**

Surgeons Justine Schober M.D. (neé Reilly) and C R J Woodhouse M.D.
interviewed 20 patients who were diagnosed in infancy with micropenis. Twelve
of these patients were adults (17 years of age or older) at the time of
the interview. All had stretched penis length smaller than the 10th percentile
one was only 4 cm (erect penis length cannot exceed stretched flaccid penis
length). "The group appears to form close and long-lasting relationships.
They often attribute partner sexual satisfaction and the stability of their
relationships to their need to make extra effort including nonpenetrating
techniques. . . . The small penis has not deferred them from a male sexual
role. [Nine of twelve of the adult patients] are already sexually active.
. . . Vaginal penetration usually is possible but adjustment of position
or technique may be necessary. . . . Two main conclusions may be drawn from
our series: a small penis does not preclude normal male role and a micropenis
or microphallus alone should not dictate a female gender assignment in infancy"
(Reilly and Woodhouse 1989).

"My own experience is that men with the smallest and most deformed
penis can have a satisfying relationship with their partner" (Woodhouse
1994).

The video tape "I am what I feel to be" (Fama Film A.G. 1997)
presents interviews in Spanish with a number of people who were born as
male pseudo hermaphrodites, raised female, and later changed to live as
men. Both they and their partners describe their lives as sexually fulfilling,
in spite of penises so small that until puberty they were considered to
be girls (Fama Film A.G. 1997).

**Appendix G

Most adult women would not choose clitoral surgery for themselves**

Dr. Suzanne Kessler, professor of psychology at the State University of
New York, surveyed college women on their feelings about clitoral surgery.

The women were asked: "Suppose you had been born with a larger than
normal clitoris and it would remain larger than normal as you grew to adulthood.
Assuming that the physicians recommended surgically reducing your clitoris,
under what circumstances would you have wanted your parents to give them
permission to do it?" . . . All the subjects were shown a scale with
the normal ranges for clitorises and penises demonstrated in actual size,
and labeled in centimeters. . . ."

"About a fourth of the women indicated they would not have wanted a
clitoral reduction under any circumstance. About half would have wanted
their clitoris reduced only if the larger than normal clitoris caused health
problems. Size, for them, was not a factor. The remaining fourth of the
sample could imagine wanting their clitoris reduced if it were larger than
normal, but only if having the surgery would not have resulted in a reduction
in pleasurable sensitivity. Only one woman mentioned that other people's
comments about the size of her clitoris might be a factor in her decision"
(Kessler 1997, p35).

There is a wealth of literature available in which adults who were subjected
to non-consensual cosmetic genital surgery as children express grief over
the physical and emotional suffering caused by the surgery, and anger toward
doctors who performed the surgery and parents who gave permission (Chase
1997; ISNA 1997). To date, no adult has come forth to say that she was grateful
for having had this surgery performed without her consent.

**Appendix H

Response to Doctors' Questions

** 1. Our recommendations are informed by academic research.

For example, our recommendations are in concordance with those of the following
respected academic researchers:

Justine Schober M.D.

Pediatric Urologist

Hamot Medical Center

Anne Fausto-Sterling Ph.D.

Professor of Medical Science

Brown University

Milton Diamond Ph.D.

Professor of Psychology

University of Hawaii School of Medicine

Kieth Sigmundson M.D.

Department of Psychiatry

University of British Columbia

Suzanne Kessler Ph.D.

Professor of Psychology

State University of New York at Purchase

Alice Dreger Ph.D.

Adjunct Professor

Center for Ethics

Michigan State University

Howard Devore Ph.D.

Life Clinical Fellow

American Academy of Clinical Sexologists

2. ISNA performs research.

We are currently engaged, with the assistance of Aron Sousa M.D. and Justine
Schober M.D., in a project which will use the new "Evidence Based Medicine"
methodology to analyze all available published outcome data on intersex
medical interventions. We are also engaged in a project, with the assistance
of Justine Schober, M.D., to gauge the psychological adjustment of intersex
adults, using a structured survey instrument.

3. Our recommendations are not based only upon technical limitations
of older surgeries.

There is no evidence that "newer" surgeries preserve sensation
or function. Indeed, because the surgery involves deep dissection and removal
of highly innervated and vascular tissue, it is literally impossible for
sensation to be unaffected. Outcome data from surgeries using similar microsurgical
techniques for reconstruction after trauma in adults (for example, facial
reconstruction, or transfer of a toe to replace an amputated finger) indicate
that sensation is typically greatly reduced, but may be altered in character,
or even painful.

Several people have come forward, whose surgery was performed during adolescence,
and who are now young adults. Thus, they provide good information about
surgical outcomes of only a decade ago. They report that surgery either
greatly reduced or eliminated clitoral sensation, or left them with chronic
pain. In some cases the pain did not develop until many years later.

Surgery inflicts emotional harm, by legitimating the idea that the child
is not lovable unless "fixed" with plastic surgery that is medically
unnecessary and carries great risks. Some individuals subjected to old style
clitorectomy surgery were lucky enough to retain sensation. They find themselves
no less emotionally harmed by the surgery. For examples, see (Coventry 1997;
Coventry 1998; Holmes 1997) and the letter from Lisset Barcellos Cardenas
to her physician in Lima.

Surgeons claiming to be developing the newest techniques concede that they
have no proof that surgery does not damage sexual function. The published
response of authors Oesterling, Gearhart, and Jeffs to (Chase 1996) concedes
that their technique "does not guarantee normal adult sexual function."

There is even some evidence that the newer surgeries may be more harmful
than the older ones. All of the cases of chronic genital pain that we are
aware of are in patients who were subjected to "modern clitoroplasty"
rather than older style clitorectomy.

4. Our recommendations represent the views of a large number of intersex
people and the growing consensus of professionals in many disciplines.

ISNA maintains a mailing list currently numbering 1000 people. Of those,
approximately 250 have told us that they, or a child, or a spouse is intersexed.

In the past several years there has been a world-wide explosion of intersex
activism, with groups representing both intersex people and parents of intersex
patients in many countries. See the Fall 1997 issue of the newsletter Hermaphrodites
with Attitude for news from intersex patient-advocacy movements in New Zealand
and Japan. The following are among the intersex patient-advocacy groups
which criticize current medical protocols:

Intersex Society of North America

Ambiguous Genitalia Support Network (USA)

Hermaphrodite Education and Listening Post (USA)

Middlesex Group (USA)

Androgen Insensitivity Support Group (USA, UK, Canada, Germany, Holland,
Australia)

Congenital Adrenal Hyperplasia Support Network (USA)

Intersex Society of Canada

Intersex Society of New Zealand

Peer Support for Intersexuals PESFIS (Japan)

Genital Mutilation Survivor's Support Network (Germany)

Workgroup on Violence in Pediatrics and Gynecology (Germany)

5. To date, no intersex person who was subjected to early surgery
has come forth to say that the views expressed by these intersex patient
advocacy groups are not representative, or to say that they believe genital
surgery should be performed on intersex children.

6. Surgery cannot prevent psychological problems.

Indeed, in many cases it is clear that surgery
itself is the cause of psychological problems. However, even if there were
some former patients who felt that they were helped by early genital surgery,
we would still argue that non-consensual genital surgery on infants is unethical,
because so many people are harmed.

7. Surgery does not provide "normal" looking genitals.

In a recent review of a dozen girls aged 11 to 15 who had undergone clitoroplasty
and vaginoplasty, Dr. David Thomas concluded "The results are indifferent
and, frankly, disappointing" with reconstructions showing visibly different
appearance from the original cosmetic result, clitorises withered and obviously
nonfunctional, and "every girl required some additional vaginal surgery."
(1997a; Scheck 1997). Even surgeries performed by leading experts had poor
outcomes: "Dr. Thomas pointed out that 70% of the original surgeries
had been performed by full-time pediatric urologists in three specialist
centers" (1997a).

8. Surgery does not prevent emotional suffering. ****

In fact, there is evidence that it causes emotional suffering. "Many
intersexuals report that the very treatments designed to prevent them from
feeling like shameful freaks are in fact causing them to feel that way"
(Dreger 1997a). "Children born as intersexes face psychological difficulties
no matter what treatment choice is made, and sophisticated on-going counseling
for both parent and child must certainly become, where it is not already,
the central component of the treatment process" (Fausto-Sterling and
Laurent 1994, p 8).

References

_1997a. Is early vaginal reconstruction wrong for some intersex girls? Urology
Times (International Medical News), February, 10-12. (Enclosed: See Tab
D)

1997b. The Pediatric Forum (letters). Archives of Pediatric and Adolescent
Medicine 151:1062-64. (Enclosed: See Tab E)

Barry, Ellen. 1996. United States of Ambiguity. The Boston Phoenix (Styles
section), 22 November, 6-8. (Enclosed: See Tab F)

Chase, Cheryl. 1996. Re: Measurement of Evoked Potentials during Feminizing
Genitoplasty: Techniques and Applications (letter). Journal of Urology 156
(3):1139-1140. (Enclosed: See Tab G)

Chase, Cheryl. 1997. Special issue on intersexuality. Chrysalis: The Journal
of Transgressive Gender Identities, fall. (Enclosed: See Tab H)

Coventry, Martha. 1997. Finding the words. Chrysalis: The Journal of Transgressive
Gender Identities. (Enclosed: See Tab H)

Coventry, Martha. 1998. On Early Surgery. (Enclosed: See Tab I)

Dateline. 1997. NBC Dateline: Gender Limbo. New York: NBC. national broadcast
television show. 17 June.

Diamond, Milton. 1996. Prenatal disposition and the clinical management
of some pediatric conditions. Journal of sex and marital therapy 22 (3):139-147.
(Enclosed: See Tab J)

Diamond, Milton, and HK Sigmundson. 1997a. Sex Reassignment at Birth: A
Long Term Review and Clinical Implications. Archives of Pediatric and Adolescent
Medicine 150:298-304.

Diamond, Milton, and H. Keith Sigmundson. 1997b. Commentary: Management
of Intersexuality: Guidelines for dealing with persons with ambiguous genitalia.
Archives of Pediatrics and Adolescent Medicine 151:1046-1050. (Enclosed:
See Tab K)

Dreger, Alice Domurat. 1997a. Ethical problems in intersex treatment. Medical
Humanities Report (Center for Ethics and Humanities in the Life Sciences,
Michigan State University) 1:1+4-6. (Enclosed: See Tab L)

Dreger, Alice Domurat. 1997b. Listening to Hermaphrodites: Ethical Challenges
to the Medical Treatment of Intersexuality. East Lansing Michigan: Center
for Ethics and Humanities in the Life Sciences. (Enclosed: See Tab M)

Dreger, Alice Domurat. 1998 forthcoming-a. Ethical Issues in the Medical
Treatment of Intersexuality and "Ambiguous Sex". Hastings Center
Report. (Enclosed: See Tab N)

Dreger, Alice Domurat. 1998 forthcoming-b. Hermaphrodites and the Medical
Invention of Sex. Cambridge: Harvard University Press. (Enclosed: See Tab
O)

Drescher, Jack. 1997. Spare the knife, study the child. Ob.Gyn.News, 1 October,
14. (Enclosed: See Tab P)

Edgerton, Milton T. 1993. Discussion: Clitoroplasty for Clitoromegaly due
to Adrenogenital Syndrome without Loss of Sensitivity (by Nobuyuki Sagehashi).
Plastic and Reconstructive Surgery 91 (5):956.

Fama Film A.G. 1997. I am what I feel to be (Guevote). Berne Switzerland:
Fama Film A.G. video. (Enclosed)

Fausto-Sterling, Anne. 1993. The Five Sexes: Why Male and Female are not
Enough. The Sciences 33 (2):20-25. (Enclosed: See Tab Q)

Fausto-Sterling, Anne, and Bo Laurent. 1994. Early genital surgery on intersexual
children: A re-evaluation. (Enclosed: See Tab R)

Hendren, W. Hardy, and Anthony Atala. 1995. Repair of high vagina in girls
with severely masculinized anatomy from the adrenogenital syndrome. Journal
of Pediatric Surgery 30 (1):91-94.

Herdt, Gilbert, ed. 1994. Third Sex, Third Gender: Beyond Sexual Dimorphism
in Culture and History. New York: Zone Books.

Holmes, Morgan. 1997. Is Growing Up in Silence Better than Growing Up Different?
Chrysalis, Fall, 7-9. (Enclosed: See Tab H)

ISNA. 1997. Hermaphrodites Speak! San Francisco: ISNA. video. (Enclosed)

Kessler, Suzanne. 1997. Meanings of Genital Variability. (forthcoming in)
Chrysalis: The Journal of Transgressive Gender Identities 2 (5):33-38. (Enclosed:
See Tab H)

Kessler, Suzanne. 1998 forthcoming. Lessons from the Intersexed: Rutgers
University Press. (Chapter Four Enclosed: See Tab T)

Meyer-Bahlburg, Heino, Rhoda S. Gruen, Maria I. New, Jennifer J. Bell, Akira
Morishima, Mona Shimshi, Yvette Bueno, Ileana Vargas, and Susan W. Baker.
1996. Gender change from female to male in classical congenital adrenal
hyperplasia. Hormones and Behavior 30:319-322.

Money, John, Howard Devore, and B. F. Norman. 1986. Gender identity and
gender transposition: Longitudinal outcome study of 32 male hermaphrodites
assigned as girls. Journal of Sex and Marital Therapy 12 (3).

Nevada, Eli. 1995. Lucky to have escaped genital surgery. Hermaphrodites
with Attitude, 6. (Enclosed: See Tab S)

New, Maria I., and Elizabeth Kitzinger. 1993. Pope Joan: A Recognizable
Syndrome. Journal of Clinical Endocrinology and Metabolism 76 (1):3-13.

Newman, Kurt, Judson Randolph, and Shaun Parson. 1992. Functional Results
in Young Women having Clitoral Reconstruction as Infants. Journal of Pediatric
Surgery 27 (2):180-184.

Oesterling, Joseph E., John P. Gearhart, and Robert D. Jeffs. 1987. A Unified
Approach to Early Reconstructive Surgery of the Child with Ambiguous Genitalia.
Journal of Urology 138:1079-1084.

Patil, U., and F. P. Hixson. 1992. The role of tissue expanders in vaginoplasty
for congenital malformations of the vagina. British Journal of Urology 70:556.

Reilly, Justine M., and C. R. J. Woodhouse. 1989. Small Penis and the Male
Sexual Role. Journal of Urology 142:569-571. (Enclosed: See Tab U)

Reiner, William. 1997a. To be male or female that is the question. Archives
of Pediatric and Adolescent Medicine 151:224-5. (Enclosed: See Tab V)

Reiner, William George. 1996. Case Study: Sex Reassignment in a Teenage
Girl. Journal of the Academy of Child and Adolescent Psychiatry 35 (6):799-803.

Reiner, William G. 1997b. Sex Assignment in the Neonate with Intersex or
Inadequate Genitalia. Archives of Pediatric and Adolescent Medicine 151:1044-5.
(Enclosed: See Tab W)

Roscoe, Will. 1987. Bibliography of Berdache and Alternative Gender Roles
among North American Indians. Journal of Homosexuality 14 (3-4):81-171.

Scheck, Anne. 1997. Attitudes changing toward intersex surgery, but for
the better? Urology Times, August, 44-45. (Enclosed: See Tab X)

Schober, Justine M. 1998. Long Term Outcomes of Feminizing Genitoplasty
for Intersex. In Pediatric Surgery and Urology: Long Term Outomes, edited
by P. Mouriquant. London: (forthcoming from) W. B. Saunders. (Enclosed:
See Tab Y)

Woodhouse, C. R. J. 1994. The sexual and reproductive consequences of congenital
genitourinary anomalies. Journal of Urology 152 (August 1994):645-651.

Young, Hugh Hampton. 1937. Genital Abnormalities, Hermaphroditism, and Related
Adrenal Diseases. Baltimore: Williams and Wilkins.

# ISNA's Amicus Brief on Intersex Genital Surgery

ISNA's Amicus Brief on Intersex Genital Surgery