RESOLUTION

BE IT RESOLVED: That the American Bar Association supports the principle that any surgical alteration of intersexed infants must be based upon the best interests of the intersexed children and requires the heightened informed consent of the minors' parent(s).

EXECUTIVE SUMMARY

1.Summary of the Recommendation

The resolution recommends that the ABA adopt standards to protect the rights and freedoms of intersexed children in conformity with the United Nations Convention on the Rights of the Child.

2.Summary of the issue that the Recommendation addresses

Intersexed infants are being surgically altered soon after birth to conform their genitalia to a medically created norm.  These surgical interventions often are undertaken in circumstances in which the infants' parents have not been fully informed about all the significant risks.  Furthermore, these surgeries may result in involuntary sterilization, diminishment or loss of capacity for sexual pleasure, and assignment into a gender that may not conform with the intersexed child's gender identity.  This recommendation proposes a procedure by which infants' rights to autonomy and  parental rights to make informed decisions on behalf of their children are protected.

3.An explanation of how the proposed policy position will address the issue

The Recommendation proposes a procedure that insures that parental decisions that may affect a child's fundamental rights are based on full information.  Furthermore, the Recommendation insures that parental decisions are based upon a consideration of the best interests of their children.  It builds upon the procedures established by the Constitutional Court of Colombia, the only high court in any country to have fully addressed this issue.  After an extensive review of internationally accepted practices in this area, the Colombia court determined that the fundamental rights of intersexed infants were being violated by the standard medical protocol.  The Court adopted a procedure to insure that parents are informed about the risks of such procedures and alternative treatment protocols.  The Court also required that parental consent be given on multiple occasions over an extended time period.

4.A summary of any minority views or opposition that  have been identified

The standard medical treatment protocol for intersexed infants is based on the presumption that intersexed children and their parents should not be exposed to facts that may create confusion about the child's gender identity.  To avoid confusion, parents and the child are often not told the entire truth about the nature of the child's condition or the controversy among experts about the appropriate treatment protocol.  Some physicians may object to a heightened informed consent standard because it may lead parents to forego surgery when the physician believes such surgery is necessary for the healthy psycho-social development of the child.

REPORT

This report provides the information to support the resolution regarding surgical alteration of intersexed infants.  This resolution should be passed because the dominant medical treatment protocol involving intersexed infants violates the fundamental rights of children as defined in the Convention on the Rights of the Child adopted by the United Nations.  This report explains the current medical and legal practices involving intersexed infants and contains a proposal for instituting a heightened informed consent procedure that will protect an intersexed child's fundamental human rights.

DEFINITION OF TERMS

Intersex Surgery: Intersex surgery includes any surgical modification or removal of the gonads, external genitalia, or internal sexual structures.

Heightened Informed Consent: Heightened Informed Consent requires that parental consent be in writing, based upon full disclosure, and given on more than one occasion over an extended period of time.

MEDICAL MANAGEMENT OF INTERSEXUALITY

Current Surgical Practices

Thousands of children are born each year with an intersexed condition.  These conditions may involve biological sex factors that are not all congruent.  In other words the chromosomes, gonads, hormones, morphology, phenotype and gender identity are not all clearly male or clearly female.  Other intersexuals are born with a condition in which one or more of their sexual factors do not fit the binary male/female norm.  For example, instead of having XX or XY chromosomes, some children are born with XXX, XXY, XYY or some other combination of "sex chromosomes."  Some of these children have typical genitalia and some have ambiguous genitalia. 

When a child is born with ambiguous genitalia, the current medical practice is to assign the child a gender and to reinforce that gender assignment with genital surgery.  Depending upon the intersexed condition involved, a number of different interventions may be undertaken, including clitoral reduction surgery, hypospadias repair, vaginoplasty, and gonadectomy. 

Clitoral Reduction Surgery:  If the treating physician determines that an intersexed child should be reared as a female, as is the case in the majority of such assignments, the physician typically will recommend that the phallus be cosmetically altered to make its size and appearance conform with accepted cultural norms for a clitoris.  Physicians generally recommend that children (including XY children) born with a phallus length of less than 2.5 centimeters be assigned the female sex because of the perception that a child with an "inadequate" penis will not be able to engage in satisfactory penetrative sex.   

Hypospadias Repair:  One in 400 males are born with hypospadias, a condition in which the urethra does not run to the tip of the penis, but instead opens along the shaft or base of the penis.  Physicians typically recommend surgical correction to allow a male child to stand while urinating.   

Vaginoplasty:  If a child will be raised as a female, and the treating physician believes the vaginal length will not be large enough to sustain penetrative sex at maturity, the physician typically recommends the creation of a neovagina, often while the child is still a minor.    In almost all cases, the surgical creation of a vagina will require post-surgical dilation in which the parents will need to insert a dilator on a daily basis into the child's vagina to prevent stricture.

Gonadectomy:  In cases in which the intersexed child's gonads are incongruent with the sex of rearing, the treating physician will also frequently recommend gonadectomy (the surgical removal of the gonads).  Gonadectomy is typically recommended for two reasons: (1) the gonads may become malignant (a risk that varies depending upon the intersexed condition involved); and (2) a child raised as a female will experience undesired virilization at puberty if her body is partially responsive to testosterone.

Debates about Current Surgical Practices

The diagnosis of intersexuality in a neonate is currently viewed as a medical emergency in need of immediate surgical and medical intervention.  The risks and benefits, however, of the four surgeries described aboveclitoral reduction, hypospadias repair, vaginoplasty and gonadecotmy have increasingly been questioned by some medical authorities, as well as by many intersexed adults who were subjected to such surgeries as infants, children or adolescents

Clitoral Surgery:  With respect to clitoral surgery, the debate has centered on two risks: (1) that the surgery, which is being performed for cosmetic reasons, will result in damage to clitoral nerve endings thereby reducing sexual sensitivity and possibly rendering the individual inorgasmic; and (2) that the child will grow up and develop a gender identity at variance with the surgically-created gender assignment. To date, there have been no long-term retrospective studies that establish any long-term psychological or other benefits to such surgery.  

Some physicians maintain that improvements in surgical techniques have reduced the risk of damaging clitoral nerve tissue.  The physiology of the clitoris, however,  remains weakly understood.  Furthermore, many intersexed adults who have experienced diminished sexual sensation and compromised sexual functioning as a result of such surgeries want to see greater safeguards imposed to prevent a similar fate for the current generation of intersexed infants and children. 

Moreover, some intersexed individuals do not identify in adulthood with the gender that was assigned to them in infancy.  This result is not surprising given that many of these assignments were made primarily on the basis of the length of the phallus, without an adequate assessment of the child's psychosexual orientation.  When such gender assignment is reinforced by irreversible cosmetic genital surgery, both the probability and the consequences of making an incorrect gender assignment are significantly increased.                  

Thus, within the medical community, a number of pediatric endocrinologists, urologists,  and other health care professionals have called for a moratorium on these surgeries until more is known about its attendant risks and benefits.  Many intersexed adults are even more vocal in calling for greater safeguards to prevent the potential harms that these genital surgeries present. 

Hypospadias Repair:  Similar concerns are raised for hypospadias repair.  The complications and failure rates for this kind of surgery are high, with many children being subjected to upward of a dozen or more surgeries simply to achieve a cosmetic result that will allow the child to urinate out of the tip of the penis.  Multiple surgeries produce a build up of scar tissue, often compromising sexual functioning and causing chronic pain and discomfort. Some surgeons argue that surgical improvements have reduced these risks, but other physicians and many intersexed individuals question this assertion.  They maintain that in the absence of thorough follow-up studies of intersexed infants to determine how they are faring in adolescence and adulthood, such surgeries should not be performed.

Vaginoplasty:  In contrast to clitoral surgery and hypospadias repair,  some outcome studies for vaginoplasty have been performed.  These studies suggest that there is a greater than 90% complication rate when such surgery is performed in childhood. The correction of  complications often requires additional surgical procedures.  One potential consequence of these procedures is that genital scarring develops that often makes penetrative sex painful or impossible. Some experts and mental health professionals also believe the practice of manually penetrating a child with a vaginal dilator in the years following surgery potentially causes profound psychological harm to the maturing child.  Thus, several pediatric endocrinologists and many patient advocates believe it is inappropriate to perform vaginoplasty on a minor who cannot give informed consent.

Gonadectomy:  The debate concerning gonadectomy has focused on whether this surgery is medically necessary in early childhood.  In some cases, the gonads must be removed at some point because the cancer risk is significant.  In other cases of intersexuality, however, the cancer risk is virtually non-existent before age 20.  Retention of the gonads, however,  would allow the intersexed child to be supplied with a natural source of hormones during puberty.  Moreover, with advancements in reproductive technologies, it is possible that the gonads could also be used to produce viable reproductive material, thereby preserving the intersexed child's future fertility.   In such cases, a number of physicians and patient advocates now recommend delaying gonadectomy until after puberty.             

In all cases of surgical intervention on intersexed infants, often decisions are made by parents or legal guardians soon after receiving the diagnosis that the child is intersexed.  These decisions will have permanent, irreversible consequences for the child.  If the situation is presented as a medical emergency, and parents are not made aware of the risks associated with each treatment option, they likely will not be able to make informed choices about the child's healthcare.  

Current Informed Consent Practices Involving Medical Treatment of Intersexuals

Generally, the need to provide information to parents about the risks and benefits of most medical procedures performed on their children is recognized by physicians. Three shortcomings, however, exist in the current information provided to and the consent received from parents of intersexed infants. 

First, many pediatric endocrinologists, urologist and surgeons have limited experience treating intersexed patients.  Furthermore, they often do not follow their patients into adolescence and adulthood.  Therefore, they often are not aware of all of the long-term consequences of these surgeries.  Many of these physicians do not make adequate disclosures about such consequences, leaving many parents with the incorrect impression that these surgeries are a proven method of treatment. 

Second, while most genital and gonadal surgeries are not performed to correct any physical health problem, there is nonetheless a sense of urgency that surrounds the birth of an intersexed child.  This sense of urgency creates a risk that parents will feel pressured to make a quick decision about surgery even if they have not had time to digest all of the potential consequences of such surgery.

Finally, many physicians, who have limited training in psychology or psychiatry, believe that "corrective" genital surgeries are essential to allowing the parent to bond with their intersexed child, and therefore present such surgeries as a given.  Many parents who consent to the surgery, however, report that they did so because the physician made it appear that a child could not experience normal psychological development without surgery.  Thus, physicians often claim they perform these surgeries because parents demand it; while parents often consent to surgery because physicians present it as a necessity.           

Most surgeries on intersexed infants are elective and do not have any effect on the child's physical health. They also have an unusually high complication rate that includes impaired sexual functioning.  In addition, they are performed at a time when uncertainty about the child's psychosexual development exists.  Therefore, before these procedures should be performed, legal institutions should insure that parents are provided with complete information and time to make a reasoned decision about whether the procedure would be in their child's best interests. Parental decisions about whether to allow surgical intervention of their intersexed infant that may result in sterility, diminished capacity for sexual pleasure and other serious psychological and physical complications must be based on procedures that protect the best interests of the intersexed child.

LEGAL HISTORY OF INFORMED CONSENT

Scope of the Doctrine

The Informed Consent Doctrine preserves patients' rights to make medical decisions on their own behalf.  Generally, the doctrine requires that patients be fully informed of all the material risks associated with the medical treatment being provided before their consent to a procedure is considered valid.  In the case of incompetents or minors who are too young to understand and balance the risks and benefits of a particular medical choice, the informed consent is required of a surrogate, typically the minors' parent(s).

Parental decisions on behalf of their children are generally accorded great deference to protect family privacy and parental authority.  Courts rarely intervene in a parent's medical decision, unless the decision conflicts with the medical advice of the infant's doctor.  It is extremely unusual for anyone to intervene in a medical decision agreed upon by the treating physician and parents, even though the child's long-term interests may be seriously compromised. 

Court intervention in parental decisions is rare because legal institutions generally presume that parents will make decisions that will be in the best interests of their children.  In determining whether to intervene in a parental decision, legal institutions will typically consider three factors:  (1) the necessity and urgency of the treatment; (2) the invasiveness and risk involved with the procedure; and (3) the age and degree of autonomy of the child. The classic case requiring a heightened level of scrutiny is the involuntary sterilization of a minor/incompetent because of the extent of the privacy invasion.  Courts will scrutinize these decisions because important rights to the patient's autonomy are at stake.

Intersexed surgical procedures involve similar autonomy issues.  Because these surgeries may result in involuntary sterilization, decreased capacity to achieve sexual satisfaction, and serious long-term medical complications, the typical deference accorded to parental decisions should not apply.  Instead, legal institutions should require a higher level of scrutiny.  Parental consent to surgery on their intersexed children should only be allowed if the circumstances guarantee that such consent is truly informed and in the best interests of the child.

Legal Authority: Intersexed Surgery and Informed Consent

Parental consent and intersexed surgery cases traditionally have not been litigated because if no conflict exists between the treating physician's recommendation and the parents' decision, no one has a stake in bringing the law suit to enjoin the surgery.  Although the infants, when they reach the age of maturity, would have standing to bring the suit, the emotional trauma involved in bringing this suit to light, 20 or more years after the event, insures that these types of actions are not brought and the rights of intersexuals are not being protected.  Therefore, legal authority in this area is scant.

Thus far, the only high court to have grappled with this issue is the Constitutional Court of Colombia.  The informed consent doctrine in Colombia is based on the same principles as the informed consent doctrine in the United States and in most other countries.  In a lengthy and well-reasoned decision, the Colombia court acknowledged the profound ethical dilemmas presented when parents consent to surgical genital alteration of their children.  The court found that surgical modification of intersexed infants must be treated differently from other types of parental consent issues.

The Colombia court acknowledged that under the then existing medical practices in Colombia, parents may not have been in the best position to make a decision on behalf of their intersexed children.  The Court was concerned because parents typically lack information about intersexuality, intersexuality is viewed as a disease that must be "cured," and treating physicians convey a sense of urgency to provide a quick cure.  The Colombia court recognized that parents consenting on behalf of their intersexed children may be motivated by their own concerns and fears rather than by the "best interests" of their children.

The Colombia court decided that protecting the human rights of the intersexed infant required it to strike a balance between allowing parents full autonomy to consent to surgical alteration on behalf of their intersexed infants and barring all intersexed surgeries.  The court decided that a balance was needed until it is clearly proven that a delay in surgery until the child reaches the age of consent is not in the best interests of the child.

The Court required legal and medical institutions to establish rules and procedures that force parents to make their decision in a manner that will focus the parents on the best interests of their child.  The Court imposed three requirements: (1) the consent must be in writing; (2) the parents must be given accurate information about the dangers of surgery and the existence of other paradigms that call for delayed surgeries that can be performed once the child is able to understand the risks and benefits involved; and (3) the consent must be given on more than one occasion spread out over a reasonable time period so that parents have some time to truly understand their child's condition and the ramifications of alternative treatment protocols.

INTERNATIONAL RIGHTS INVOLVED

The surgical alteration of intersexed infants involves critical international human rights.  The dominant medical management protocol practiced in many nations violates a number of Articles of the Convention of the Rights of the Child, adopted by the General Assembly of the United Nations on November 20, 1989.  It potentially violates:

Article 2: Article 2 requires that children not be discriminated against on the basis of sex.  Current medical protocol emphasizes an XY child's ability to engage in satisfactory sexual intercourse over the child's potential desire to procreate.  For XX children, the need to procreate, rather than the ability to engage in satisfactory sexual intercourse, is emphasized.  This protocol discriminates between XY and XX children and is therefore discriminatory.

Article 3: Article 3 requires that in all actions concerning children, the best interests of the child shall be a primary consideration.  Current medical protocol emphasizes the need to "normalize" the child to ease the psychological discomfort of the parents.  Surgical alteration of a child that may result in involuntary sterilization, diminished capacity for sexual satisfaction, and a gender assignment that may be contrary to the child's gender identity does not insure that the best interests of the child are a primary consideration.

Article 12: Article 12 protects children's rights to have their opinion taken into account in any matter affecting them.  Current medical protocol insures that children do not have input into decisions that have a profound effect on their lives, including their ability to procreate and achieve sexual satisfaction.  Because these surgeries are not medically necessary and can be performed at any time during the intersexed person's life, performing elective surgery before the age of consent violates the children's right to voice an opinion about their future.

Article 16: Article 16 protects a child from interference in their right of privacy.  Procreative decisions are considered a fundamental privacy right under the United States Constitution and the laws of many other nations.  Allowing doctors to perform elective surgery that may result in involuntary sterilization violates the child's fundamental right to privacy.

Article 18: Article 18 requires that parents shall have the primary responsibility for their children and the best interests of the child shall be the basic concern of the parents.  Under the dominant treatment protocol, parents are often not given enough information so that they can accurately determine the long-term best interests of their children.

Article 19: Article 19 requires the State to take all appropriate measures to protect children from physical or mental violence, injury or abuse, and neglect or negligent treatment.  Some intersexed persons who were surgically altered during infancy have suffered from emotional disturbance and physical complications.  Allowing doctors to continue the current practices does not adequately protect the child from potential mental and physical harm.

Article 23: Article 23 provides that disabled children are entitled special care that will help the child to enjoy a full and decent life in dignity.  Some intersexed persons who were surgically altered during infancy maintain that their ability to fully enjoy life has been irrevocably altered by the irreversible surgery to which they were subjected.

Article 24: Article 24 recognizes that children are entitled to the highest standard of health and medical care attainable.  Article 24.3 requires States to take effective and appropriate measures with a view to abolishing traditional practice prejudicial to the health of children.  Although Article 24.3 addresses female genital mutilation, its provisions would also apply to intersexed infant surgery which is also based in part upon cultural norms and stereotypes.

PROPOSAL

To insure that the rights of intersexuals in the United States and other nations are protected to the same extent as the rights of intersexuals in Colombia, the ABA proposes the adoption of a heightened informed consent rule when parents consent to the genital modification of their intersexed infants.  This heightened informed consent requires:

1.Parents should be provided with complete written information about their child's condition.

2.Parents should be given the opportunity to consult with mental health professionals who are experienced in the clinical management of intersexuality.

3.Parents should be provided with contact information for intersex support groups so that they can receive input from intersexed adults who have experienced surgical treatment as well as other parents of intersexed infants who have had to make similar decisions.

4.Parents should be presented with the option of delaying any surgical intervention until the intersexed patient is of an age to make his/her own decision about the appropriateness of surgical  treatment.

5.Parents should be presented with complete information concerning the risks and complications attendant to surgical intervention, including the potential loss of sexual sensation, the potential loss of the ability to procreate, the possibility that the surgical intervention may not conform to the child's gender identity, the risk of scarring, the risk of incontinence, the potential need for future surgeries and the negative emotional consequences that may result from surgical intervention.

6.Parents should be informed that no long-term studies have been performed that either: (a) prove that early surgical intervention provides a therapeutic benefit; or (b) assess the benefits of early surgical intervention compared to alternative treatment protocols.

7.Parents should be told that several pediatric endocrinologists and urologists have called for a complete moratorium on infant genital surgery until retrospective studies demonstrate that the benefits of such early surgical treatment outweigh the potential negative consequences.

8.The consent should be given in writing.

9.The consent must be given on more than one occasion spread out over a reasonable time period to insure that parents have enough time to truly understand their child's condition and the ramifications of alternative treatment protocols.

10.     Parents should be informed that their child's ability to receive medical care is not dependent upon the parents' consenting to surgery.

Comments to 

Alyson Meiselman famlaw@his.com

Organisation Intersex International

Addressing the American Bar Association on surgical alteration of intersexed infants