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Notes on the Treatment of Intersex

Prepared by Alice Dreger, Michigan State University (dreger@msu.edu)

Key points of
comparison

Older paradigm of treatment
(CONCEALMENT -CENTERED MODEL)

Reform paradigm of treatment
(PATIENT -CENTERED MODEL)

Who are the proponents of each paradigm? John Money, most pediatric urologists and pediatric endocrinologists, many gynecologists (including the physicians Patricia Donohoe, Kenneth Glassberg, etc.) Intersex activists (including Cheryl Chase), most involved ethicists (including Alice Dreger, Edmund Howe, Robert Crouch), a few physicians (including Bruce Wilson, William Reiner, Justine Schober)
What is intersex? Intersex is an anatomical abnormality which is highly likely to lead to great distress in the family and great distress for the intersexed person. Intersex is pathological and requires medical attention. Intersex is an anatomical variation from the "standard" male and female types; just as skin and hair color varies along a wide spectrum, so does sexual anatomy.
Is gender determined by nature or nurture? Nurture. Virtually any child can be made into a "boy" or a "girl" if you just make the genitals look convincing. It doesn't matter what the genes, brain, pre-natal life are/were like. Both, surely, but that isn't the point! The point is that intersexed people ought to be treated with the same basic ethical principles as everyone else - respect for their autonomy and self-determination, truth about their bodies and lives, etc. Physicians and researchers should stop using intersex in "nature/nurture" experiments.
Are intersexed genitals a medical problem? Yes. Untreated intersex is highly likely to result in depression, suicide, and possibly "homosexual" orientation. Intersexed genitals must be normalized if these problems are to be avoided. (Note: There is no solid evidence for this position, and there is evidence to the contrary.) No. Intersexed genitals are not a medical problem. They may signal an underlying metabolic concern, but they themselves are not diseased; they just look different. Metabolic (medical) concerns should be treated medically, but intersexed genitals are not in need of medical treatment.
What should be the medical response? The correct treatment for intersex is to "normalize" the abnormal genitals using cosmetic surgical technologies, cosmetic hormone technologies, and so on. Doing so will eliminate the potential for psychological distress. The whole family should receive psychological support (including referrals to peer support groups) and as much information as they can handle. True medical problems (like urinary infections) should be treated medically, but all cosmetic treatments should wait until the patient can him/herself consent to them.
When should cosmetic "normalizing" treatments be done? As soon as possible. The longer you wait, the greater the trauma. ONLY if and when the intersexed person requests them, and then only after she/he has been fully informed of the risks and likely outcomes. S/he should be able to talk to others who have had the treatments to get their views of them.
Why should intersex be treated this way (the way your side advocates)? Because our society can't handle genital ambiguity or non-standard variation. If we don't fix the genitals, the intersexed child will be ostracized, ridiculed, rejected, and so on. Because the intersexed person has the right to self-determination where his/her genitals are concerned. Doing surgeries early interferes with that right; many surgeries and hormone treatments are not reversible. In addition, the risks from cosmetic treatments are substantial (risks to sensation, continence, fertility, risks of pain, scarring, etc.) and, given that the goal is cosmetic, these risks should only be taken if the patient him/herself has consented.
Who should counsel the parents when an intersex child is born? The surgeons, endocrinologists, and maybe a genetic counselor. The parents need to be told their child does have a sex (male or female), but that we haven't figured it out yet. We will "figure it out" (in reality, the doctors will decide what sex they will assign) and advise you as soon as possible. A trained psychologist (including one familiar with the grief process common to parents facing traumatic surprises in newborns) and peer support groups.

In addition, we should make information about intersex as widely known as possible so that all expectant parents will have heard of intersex, just as they have heard of cleft palate.

Parents, intersexed people, and the public need to be provided with non-pathologizing images of intersexed people.

How do you decide what gender to assign an intersexed newborn? The doctors decide. They do genetic and other tests immediately.

If the child has a Y chromosome and an adequate penis (or "reconstructable") penis in the eyes of the doctors, the child will be assigned a male gender.

If the child has a Y chromosome and an inadequate penis (or "unreconstructable") penis in the eyes of the doctor, the child will be assigned a female gender and surgically "reconstructed" as such. (Newborns must have penises of 1 inch or larger if they are to be assigned the male gender.)

If the child has no Y chromosome, it will be assigned the female gender. The genitals will be surgically altered to look what the doctors think female genitals look like. This will include clitoral reduction, construction of a "vagina" (a hole), and so on.

The doctors in consultation with the family decide. They do genetic and other tests immediately. Then, given what is known about the child in question and about the aggregate histories of intersexed people with various conditions, they will assign the gender most likely to be accepted by the family and child.

The child is assigned a male or female gender.

The doctors and parents recognize, however, that this gender assignment (like ALL gender assignments) is preliminary. The child may decide later to change it. That is why medically unnecessary surgeries should not be done without the child's consent; the child may want the flesh later to construct genitals different than the ones the doctors would have chosen.

What should the intersexed person be told when s/he is old enough to understand? Very little, because telling all we know will just lead to gender confusion that all these surgeries were meant to avoid. Withhold information and records if necessary; use euphemisms (like "we removed your twisted ovaries" instead of "we removed your testes" when speaking to a woman with AIS). Everything we know. The intersexed person has the right and responsibility to know as much about her/his condition as her/his doctor does.
What's wrong with the opposing paradigm? Parents might be uncomfortable with a child with ambiguous genitalia.

The intersexed person might later wish that her/his parents had chosen to have her/his genitals "normalized".

The autonomy and right to self-determination of the intersexed person is violated by the surgery-centered older model.

In the older model, surgeries are done without truly obtaining consent; parents are not told the failure rate of, lack of evidentiary support for, and alternatives to the surgery approach.

Children assigned "male" and those assigned "female" are treated according to sexist asymmetrical lines in the older model.

Lying to or deceiving patients and parents is wrong, even if done with beneficent intentions.

What is the ideal future of intersex? Elimination via improved scientific and medical technologies. Social acceptance and the recognition that sexual categories are socially constructed.



Further reading:

* See the website of the OII Intersex International Society: OII)

* Dreger, Alice. 1998. When Medicine Goes Too Far in the Pursuit of Normality. New York Times, 28 July, Science Times.

* Dreger, Alice. 1998. Special issue on intersexuality. Journal of Clinical Ethics 9 (4).

* Dreger, Alice. 1999. Intersex in the Age of Ethics. Hagerstown Maryland: University Publishing Group.

* Dreger, Alice Domurat. 1998. "Ambiguous Sex" - or Ambivalent Medicine? Ethical Issues in the Medical Treatment of Intersexuality. Hastings Center Report 20 (3):24-35.

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