(The following is reproduced with kind permission of Prof Milton Diamond.)

Three Recommendation to the Medical Community

regarding the Surgical Assignment of Sex
by Kenneth Kipnis, Ph.D. and Milton Diamond, Ph.D.

First Recommendation:

That there be a general moratorium on such surgery when it is done without the consent of the patient.

In arriving at this first recommendation, we do not appeal to the premise that normalizing surgery in infancy does more harm than good. As noted earlier, the large-scale studies that could confirm this have yet to be done. While only a skeptical premise is warranted -- i.e., that we do not now know that surgery does more good than harm -- it suffices nonetheless to justify a moratorium.

As a firm rule, doctors should never undertake surgery, especially without consent, unless there are disproportionate hazards associated with all of the other options: Above all, do no harm. The presumption has always to be against surgery unless two types of evidence are at hand. First, one needs to know that comparable patients generally do well after the surgery: such data are not at hand regarding the adult beneficiaries of these surgeries. And second, one needs to know that comparable patients generally do badly without the surgery. Since surgery is always harmful per se, it should never be done unless there is an expectation of ample compensating benefits. Because this evidence is lacking, the surgical assignment of sex remains an experimental procedure: one in which the results cannot be properly assessed until at least 20 years after the intervention.

Accordingly, it is not possible for a patient's parents to give informed consent to these procedures precisely because the medical profession has not systematically assessed what happens to the adults these infant patients become. Doctors can't tell parents what the long-term risks and benefits are because they haven't done the studies and don't know.

With the publication of the rest of the John/Joan story, and the additional research sketched above, the standard of practice appears to have lost the epistemic foundation it was earlier thought to have. And yet for some reason these operations continue despite the erosion of their justification. We recommend that all pediatric surgical assignments be suspended until these issues are resolved.

Two caveats: We are not arguing that medically justified surgical interventions be withheld. Many conditions -- bladder exstrophy, certain types of CAH -- are associated with risks of morbidity, mortality and loss of function. Such conditions should always be treated appropriately. And second, we are not suggesting that intersexual children be raised without gender. The choice of gender assignment should take into account the infant's condition, including its causes, and whatever is known about the prognosis. The aim must be to raise infants in a way that will most probably turn out to be comfortable for the maturing child. But gender assignment has to be provisional, subject to revision by the intersexual child as he or she matures. Our objection is to the surgical assignment of sex, not to gender assignment per se.

Second Recommendation:

That this moratorium not be lifted unless and until the medical profession completes comprehensive lookback studies and finds that the outcomes of past interventions have been positive.

In part, this recommendation emerges from sympathy with the view that early surgery may be medically indicated for some types of intersexuality. We need to know more, for example, about the high incidence of cancer in cases of mixed gonadal dysgenesis.

But a stronger justification flows from medical integrity: the profession's ethical commitment to learn as much as it can, even when it makes mistakes. [54, 55] Luckily, a 20-year double-blind prospective study is unnecessary. There are now many thousands of grown intersexuals who have and who have not had surgical and hormonal treatment. Retrospective outcome studies can now be done on these adults, uncovering the comparative effects of treatment and nontreatment. The willingness to subject its practices to honest scrutiny is part of what any profession owes to the community it serves, part of what makes the profession worthy of its community's trust. Pediatrics has an obligation to assess the mature products of its handiwork.

Finally, these studies may be of significant benefit to intersexuals themselves. If the studies find these patients to be at risk for certain medical conditions, this information should be passed along so they can plan and act accordingly.

Third Recommendation:

That efforts be made to undo the effects of past physician deception.

For years, pediatric surgeons have stressed the necessity of rearing post-surgical intersexual infants as unambiguous boys or girls. We do not question that. However, in implementing this approach, parents and clinicians have often concealed aspects of surgery and treatment from the child and excluded maturing children from medical management decisions. Joan Hampson, one of Money's early co-authors, has remarked: "Oddly, even in children old enough to have some opinion, in our experience it has been rare that they have been given any opportunity to express it." This practice can take the form of a well-intentioned albeit deceptive conspiracy between family and clinicians and against the child.

Taking the long view, one might ask when, if ever, these former patients should be told of their medical histories. Should it be the intention, at infancy, that these patients never be told or, rather, is the mature or maturing patient entitled to know? There is no standard that the pediatrician advise parents to disclose when their child reaches puberty or adulthood or at any other time. Adults who have had these procedures in childhood are now presenting at clinics quite ignorant of their history.

This secrecy does damage to the patient. For success in deception entails that the adult patient not understand his or her medical condition. Just to the extent that these adults are misled, they cannot act rationally out of a realistic appraisal of their situation.

But a second objection proceeds from the observation that these cultivated illusions cannot be nurtured reliably and indefinitely. Often patients will discover their condition from an inadvertent family slip, community gossip or personal investigation into puzzling aspects of their lives. As these children mature into full adulthood and initiate independent clinical relationships, the web of deception will weaken, at least to the extent that the patient develops genuine relationships of trust and confidence with doctors. Unless the entire profession is complicit (thereby ruling out genuine relationships of trust and confidence), one must expect that the truth will emerge. And when it does, the patient will learn anyway what she or he was never supposed to have found out. (If the patient is going to find out anyway, surely it is better for the physician to initiate disclosure.) Even more disturbing than discovering the secret, the former patient will also discover that his or her deformity is unspeakably shameful in the minds of parents and physicians. Last, the former patient will learn that she or he has since childhood been systematically deceived by the very people who should have been the most trustworthy. These patients will often avoid physicians and become estranged from their parents. All this is damaging. Most of it is needless.

On a broader scale, it will not be only those patients who learn that physicians are willing to participate in deception. It will be the general community who come to know that doctors choreograph familial mendacity: this is what the former patients are saying.

We recommend that the medical profession find ways to own up to these adults, initiating disclosure of the medical histories doctors have helped to conceal from their former pediatric patients. In addition to the ethical obligation, clinicians may even have legal duties to warn their former patients when matters of importance are discovered.

One final conjecture. It may well be that this lack of candor is at the root of the profession's failure to do the needed outcome studies, the reason why so many former patients are "lost to follow-up." For researchers cannot easily question former patients on the effects of surgery done in infancy when those same patients have never been informed of the surgery, let alone the reasons for it. Although our recommendations are threefold, they speak to a single complex problem. Parents cannot be informed of the expected outcome of the pediatric surgery because the adult outcome studies have not been done. And the adult outcome studies have not been done because these adults have not been informed of the surgery. We may have here an epistemic "black hole" that entraps parents, patients, and physicians in lies, secrets, and avoidable ignorance. While it will take intellectual integrity and professional courage for these pediatric practitioners to extricate themselves, we expect the profession will rise to this occasion.