If I ain't broke, don't fix me

arvan's picture

I received a compelling link this morning from OdaRygh on the genital reassignment of children, for cosmetic and social reasoning.  When girls in Africa have their clitoris removed, we call it genital mutilation.  When a boy is born with a small penis and is subsquently subjected to surgery to remove testicles and create a sterile womb - it is done under the auspices of social pressure & male value as determined by penis length. 

Sterility is sterility.  Trauma is trauma.  No choice is no choice.  Please read the full article below.  You can see the entire article with links, here.

There is an detailed and relevant site, focused on a proposed bill to end this practice at mgmbill.org.

 

 

Ethical commentary on gender reassignment: a complex and provocative modern issue
Pediatric Nursing ,  Jan-Feb, 1998  

by Anna J. Catlin 

As ethics editor for Pediatric Nursing, I have examined many difficult ethical issues over the last year in this column. The normal procedure is to choose a manuscript that we have accepted for publication, extensively research the issue, speak to experts in the field, weigh the competing ethical principles, and then come up with a reasoned response. Regarding the issue of gender reassignment, this article provoked me, fascinated me, and confused me simultaneously. The literature was oppositional, experts in the field disagreed, the popular press accounts were sensationalizing. I began to dread writing the response for fear of publishing an inaccurate or incorrect response. Ethics training teaches us to ask the basic moral questions: "What is the good?" and "How do we know?". This commentary is offered with uncertainty, stating what I think may be the good and how I think I know.
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The Case

In the article by Rossiter and Diehl "Gender Reassignment in Children," the health care providers propose what they view as the correct course of action for Baby E. They would like to take this genetically born boy, with XY chromosomes but insufficient male genitalia, and reshape and reassign him to the female sex. This surgery, helping Baby Boy E to become Baby Girl E, has been performed for more than 25 years in the United States, and was considered the appropriate and beneficent medical therapy in much of the literature reviewed (Donahoe & Schnitzer, 1996; Izquierdo & Glassberg, 1993; Lee & Donahoe, 1997; Page, 1994; Slaughenhoupt, 1997).

Performing the surgery, however, did not fit into these parents' world view. This couple, having their first baby together, were told after amniocentesis that their baby was a boy. Presumably they shared this news with family and friends and perhaps attached some meaning to the fact that their expected child was a male. For example, Grant (1995) discussed the practices of male children supporting their parents versus female children requiring dowries in various cultures. In spite of advice from the geneticist, endocrinologist, urologist, and pediatricians, Mr. and Mrs. E. did not wish to allow their child's gender to be changed.

The authors, in response to Mr. and Mrs. E.'s refusal, wrote that the parents' decision "sets the groundwork for future psychosocial challenges and potential harm to his well being." This statement may or may not be accurate. The statement, however, that the parents' decision "may be viewed as tantamount to an abdication of parental responsibility and may be interpreted as neglect" needs closer examination. "Should parental decisions in cases not involving life and death be overruled?" asked Rossiter and Diehl. This article will attempt to answer the authors by discussing three important points: (a) theoretical thinking on how gender is assigned; (b) controversy over the procedure, including recent protest over the procedures in the lay press; and (c) ethical thinking about the child in context of the family, using Burck's Ethical Decision Making Model (1996) scale of competing ethical obligations; and referring to case law on parental decision making.

The Theory

The reassignment of gender has been thought of as an appropriate intervention based on the work of John Money and colleagues. These researchers presented the psychological and medical communities with the premise that gender was an "environmentally produced social phenomena," and therefore that prenatal genetic assignment or "biological imprint" could be overridden. Money and Ehrhardt (1972) viewed newborns to be in a state of psychosocial gender neutrality. Money's colleagues, Hampson and Hampson (1961), listed seven different methods to determine sex or gender:

1. Sex of assignment.

2. Chromosomal sex.

3. Gonadal sex.

4. Hormonal sex.

5. Sex of internal sexual organs.

6. Sex of external genitalia.

7. Psychological sex or gender role.

With this thinking, one can see that the health care providers of Baby E, a baby who at birth exhibited only one or two of the seven components of male sex determination, might be correct in thinking that it was possible to reassign his gender.

Diamond (1996a, 1996b, Diamond & Sigmundson, 1997) is the main antagonist to Money's work. Diamond stated that gender assignment is not only a postbirth phenomena, but an interaction between nature and nurture that begins with prenatal hormones which organize sex differences in the brain. Per Diamond's thinking, assigning a child's sex based on size and functionality of the phallus (how it is usually done) is to deny the influence of the nervous system, which is present in the child regardless of genital appearance. Although many authors recommend that the initial gender reshaping surgery be initiated prior to discharge from the newborn nursery or in the immediate first 3 to 6 months (Castiglia, 1989; Grunt, 1985), Diamond wrote that this is "imposed upon and unconsented-to surgery." Diamond feels that in surgery of such serious nature, children should have a say and be involved in the decision. He bases this on recent studies showing psychic distress in the children whose sexes were changed. These studies differ from Money's early studies which showed that reassigned children were doing well and were involved in healthy heterosexual relationships. Diamond and Sigmundson (1997) reviewed many cases of gender adjustment (born XX, look like male, adjusted to female) and gender reassignment (born XY, look like female, changed to female), and found unstable psychological status with the desire to change back to the original gender or the way their bodies originally presented. In a review of 50 cases of genetic XX children with male virilization at birth who underwent clitoridectomy, 10% later chose to be sexually reassigned to male, and only 37% reported ever entering into a heterosexual relationship (Azziz et al., 1986). Psychologists have reported cases of virilized girls, who had the masculine organs removed at birth, that later underwent psychotherapy regarding their "tomboyishness" (Gupta, 1990; Zucker, Bradley, & Hughes, 1987). After interviews of patients who had undergone reassignment surgery, Kessler (1998) reported that these adults would never have chosen this surgery for themselves.

 Some of those who have undergone surgical reshaping of genitalia, due to ambiguity or circumcision accident, have recently formed an "intersex" protest organization. Members of the group are crusading to stop the surgical operations (Cowley, 1997; Gorman, 1997; Tuller, 1997). The group Hermaphrodites with Attitude marched last year at a Boston pediatrics conference. It is difficult to ascertain how representative this group is of all children who have had genital reshaping, as there are some adults who were not told of their reassignment and do not know the reason for their frequent surgeries as children (Grant, 1995; Peyser, 1997). Cheryl Chase, founder of the Intersex Society of North America, states that genital reconstruction "scars children for life, deprives them of normal sexual sensation, and forces them into an existence of secrecy and shame" (Tuller, 1997, p. Al 5).
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The complexity of the issue is exemplified by the case of a congenital XX girl who was extremely virilized at birth, complete with penis-appearing phallus and scrotal sac (Langslow, 1994). The child was listed as male sex on his birth certificate and given the name of Andrew. Upon examination, it was determined that the child was of the female chromosomal sex. The infant underwent surgery to remove the male organs and was assigned the female sex. She was given hormones to induce the growth of breasts. She grew up, however, wanting to be a boy, and went to court at 16 to be allowed to have a bilateral mastectomy, oophorectomy, hysterectomy, and reshaping of a penis so that she could be reassigned to male, which "Andrew" felt he was, all along.

Gupta (1990) reported the therapeutic interventions used with genetic XY child reassigned to female who was not well adjusted to the changes in her body. Gupta advised that for a male 46XY infant to be reassigned to female, the following interventions must take place:

From birth, immediately on, the child must be clinically

and socially habituated as a girl. In infancy, genitalia

must be surgically feminized. At the onset of

puberty, female hormonal therapy must be given. A

vaginoplasty must be created (which may involve the

long-term use of vaginal dilators per Costa et al.

[1997]). Family socialization must be healthy and

adaptive. There must be no secrecy or stigmatization

of the child. The child must be aware of what is happening

to her body. There must be no ambiguity of

parental treatment of her as a girl.

Due to the recently publicized cases which express complicated physical and psychological aftereffects of the surgeries, Diamond (1996a, 1996b) takes a different approach. She suggested that a four-step approach be taken to ambiguous genitalia:

* At birth, astute judgment be used to select the sexual assignment of the child.

* Parents raise the child accordingly.

* Nothing is done surgically that might later need to be undone. Micropenises should be left in place. Ovaries and uterus should not be removed. Testes should not initially be removed (although per the United Kingdom Testicular Cancer Study Group [19941 to prevent malignancy, testes may later need to be removed.)

 * Counseling and education should be offered first to the parents, and then to the person of intersex, allowing them to choose.

Ethical Questions to Consider

1. Is a functional and full size penis of essence to human male existence?
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The basic philosophy of gender reassignment science revolves around this fact, and physicians consider reassignment to the female sex with vaginoplasty a beneficent act. A case was described in which, with ongoing support and counseling, a genetically XY infant was reassigned to female and successfully led a female life (Rekers, 1995, pp. 115-116). Yet recent anecdotal reports in the lay press report intersex adults refuting this claim. The cases of Andrew (Langslow, 1994) described above, and of John (Diamond & Sigmundson, 1997), a male who because of a circumcision accident was reshaped into a female, yet later insisted on returning to the male sex, reveal that as adults these men felt satisfied with their "micropenises." It was reported that Schrober, a pediatric urologist, examined 12 adults with intact micropenises, "every one of them reported erections and orgasms. Seven were married or cohabiting, and one had fathered a child" (Cowley, 1997, p.66). It is possible, as in many other ethically problematic issues in medicine, that the basic science needs to be continually assessed, as so often decisions about the lives of real people are not based on random control trials to find correct answers. There was no data found by Diamond and Sigmundson to substantiate that a male's self image was "dependent on a functional penis" (1997, p. 302).

2. Is this issue similar to other issues in which parents and professionals need to really discuss virtues and values and come to conclusions about what is best for a particular child in a particular family?

Raines (1996), in a discussion on the need to understand parental values in neonatology, reminded us that decisions based solely on statistical success were not necessarily consistent with right or good actions. Penticuff (1988) used Veatch's model of "bonded guardian" decision making. Bonded guardians are those who have had a relationship with the fetus/infant prior to the crisis event; they differ from non-bonded guardians who enter the situation only at the point of crisis, such as the health care team. Penticuff stated that parents as bonded decision makers who have the best interests of their infant at heart, are in possession of relevant facts, and are able to think rationally, can be morally justified in making decisions for their children. Duff (1987) similarly discussed "distant" versus "close up" ethics, in which the family, who will remain close to the child, should have more to say than the providers, who will soon pass from the child's life. For Mr. and Mrs. E in the aforementioned article, the writings of Penticuff and Duff appear to hold true; this is their child and their values and their decision.

3. Is the issue of gender reassignment, like the tension over neonatal resuscitation of micro preemies or the repair of hypoplastic left hearts, one of medical technology progressing faster than the ethical thinking supporting it?

Because we know how to reassign external genitalia and provide sex hormone, are we sure we should do it? Callahan (1994), discussing the problems of advanced medical technology, stated that "we may not know that we should not have crossed the line until after we have crossed it." Callahan's view is that we should take emotional repugnance as a response to a technological intervention seriously. Repugnance is a strong word, but there does seem to be something intrinsically troubling about separating the sex of hormones and chromosomes from the sex of genitalia, and favoring one sort over the other. If the members of "intersex" now speaking out are to be taken seriously, then as Diamond says, perhaps nothing surgical should be done until the grown child can tell us how she or he feels.
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Weighing Competing Values

Thus the ethical dilemma, which can be mapped out using the Burck scale (Catlin, 1997) to weigh competing obligations, is as follows:

Obligations:

Honor parents' rights to decide for their children in non life threatening conditions.

Permissible (at this state of the science):

1. Prevent child from future harm as an adult, treat child as any other child with a disability (Diamond & Sigmundson, 1997), and do not do surgery; or

2. Continue to talk to parents to obtain consent and do the surgery, ensuring proper long term counseling of parents and child.

Less Permissible:

Decide based on older studies and past practice that the child needs functional sex organs and organs that look like other children's, and perform established procedure with court order if one can be obtained.

The competing values would then be placed on the scale and the one weighing the highest would be honored. In this case, obligation to parents weighs heaviest.

Obligation      Permissibility    Prohibition
        X       XX      X
absolute stringent      more     less preferable stringent absolute
        preferable

Bibliography for: "Ethical commentary on gender reassignment: a complex and provocative modern issue"

Grant, D.B. (1995). Ethical issues in children with ambiguous genitalia. British Journal of Urology, 76, Suppl.2, 75-78.

Grunt, J.A. (1985, October 15). The newborn who's not quite boy or girl. Emergency Medicine, 81-82.

Gupta, S , (1990). Psychological development in a genetic male surgically reassigned as a female at birth. American Journal of Psychotherapy, 44(2), 283-289.

Hampson, J.L., & Hampson, J.G. (1961). Ontogenesis of sexual behavior in man. In W.C. Young (Ed.), Sex and Internal Secretions (Vol. 11), (2nd edition). Baltimore: Williams & Wilkins.

Izquierdo, G., & Glassberg, K.I. (1993). Gender assignment and gender identity in patients with ambiguous genitalia. Urology, 42(3), 232-242.

Kessler, S.J. (in press). Lessons from the intersexed. Piscataway, NJ: Rutgers University Press.

Langslow, A. (1994). A sexual switch is no child's play. Australian Nursing Journal, 1(9), 35-36.

Lee, M.M., & Donahoe, P.K. (1997). The infant with ambiguous genitalia. Current Therapy in Endocrinology and Metabolism, 6,216-223.

Money, J., & Ehrhardt, A.A. (1972). Man & woman, boy & girl. Baltimore: Johns Hopkins University Press.

Page, J. (1994). The newborn with ambiguous genitalia. Neonatal Network, 13(5), 15-21.

Penticuff, J.H. (1988). Neonatal intensive care: Parental prerogatives. Journal of Perinatal Neonatal Nursing, 1(3), 77-86.

Peyser, M. (1997). A tragedy yields insight to gender. Newsweek, 129(12), 66.

Raines, D. (1996). Parents values: A missing link in the neonatal intensive care equation. Neonatal Network, 15(3), 7-12.

Slaughenhoupt, B.L. (1997). Diagnostic evaluation and management of the child with ambiguous genitalia. Kentucky Medical Journal, 95,135-141.

Rekers, G.A. (Ed.). 0 995). Handbook of child and adolescent sexual problems. New York: Lexington Books.
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Tuller, P. (1997, June 21). "Intersexuals" begin to speak out on infant genital operations. San Francisco Chronicle, A15, A19.

United Kingdom Testicular Cancer Study Group. (1994). Aetiology of testicular cancer: Association with abnormalities, age at puberty, infertility, and exercise. British Medical Journal 308(6941), 13931399.

Zucker, K.J., Bradley, S.J., & Hughes, H.E. (1987). Gender dysphoria in a child with true hermaphroditism. Canadian Journal of Psychiatry, 32(7), 602-609.

Additional Readings

Zucker, K.J. (1996). Commentary on Diamond's "Prenatal Disposition and the clinical management of some pediatric conditions." Journal of Sex & Marital Therapy, 22(3), 148160.

Zucker, K.J., & Bradley, S.J. (1995). Gender identity disorder and psychosexual problems in children and adolescents. New York: Guilford Press.

Anna J. Catlin "Ethical commentary on gender reassignment: a complex and provocative modern issue". Pediatric Nursing. FindArticles.com. 12 May, 2009. http://findarticles.com/p/articles/mi_m0FSZ/is_n1_v24/ai_n18607685/

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