There has been considerable controversy over whether surgeons should immediately make a decision about an infant's sex and quickly correct ambiguous genitalia. The consensus statement seems to promote a more cautious approach to surgery, while still assigning gender rapidly. What is your view?
I'm saying intervene [with surgery] only if you've proven that intervention is actually of benefit to the patient. Not of benefit to the parent. Because you know that surgery is used a lot to help the parent psychologically. It's a quick fix, if you will. The child looks different, it's very distressing for everyone, and one way to make it go away is just to make the kid look like everyone else. And that's really psychological help for the parents. But that should not be a parameter for surgery. We're talking about psychological distress to the parents, and that should be treated appropriately by a psychologist or psychiatrist, but not by surgery of the child.
Do you think this consensus statement will change the common practice of performing sex-assignment surgery early on?
(laughing) Well, yes. See, the consensus statement is a house of cards. You build it once, and there's no one that really inhabits it; it can be destroyed. They're not guidelines. I think it will change, but it will require some additional work. One of the things I think should happen next is to have a few leading clinics actually apply all the consensus recommendations and then do studies showing whether they actually impact the health and the well-being of the patient. It's not easy to do, because some of the recommendations require money. Like saying, "We need a psychologist"—that's easier said than done. There's no funding for having a psychologist in all these clinics. So I think it will influence some things. For instance, the nomenclature will change. I get a lot of phone calls and e-mails from authors of major textbooks, they're going to change. Also from editors of journals who publish articles about intersex, so that's going to change. But will that change the general outcome of patients? I don't know. I hope so. I think it's a step in the right direction.
Many physicians and geneticists look at intersex simply as a medical condition that should be addressed. You seem to take patients' social and political concerns very seriously, too. Why?
I've always been interested in the fact that medicine is very normative, and reductionist—it reduces people to their pathologies .'' Medicine should be in the business of making people as a whole better, rather than just curing the disease. And anyway, I'm not the only one saying that. Actually, I always use cancer as an example. A lot of cancer doctors are very well aware of this. They're offering options that sometimes do not include treatment just because they're aware of the fact that the treatment would ruin the quality of life so much that it's just not worth it.
How do you handle working in a field that is so volatile socially and politically? Everything that you do, people jump on and make claims about sexuality or gender.
I interpret everything conservatively. You have to not make the mistake of overinterpreting anything. That's my way of trying to navigate that. You also have to be aware of the social sensibilities. You can't just have an autistic approach to it and say, I'm just going to ignore it completely. If you're aware of the social sensibilities, and if you don't overinterpret your data, you're in good shape.
How do you stay aware and informed?
Being part of ISNA is one way [as a member of its medical advisory board]. It forces me to listen to what the patients have to say, which is really not part of the medical culture, at least in this field. The way to assess the well-being of a patient is to really listen to what the patient has to say.