Genital Surgery On Intersexed Children

letter - page 3

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.

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