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DSD and genital surgery: Are caregivers failing the ‘thank you’ test?
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One of the most contentious topics in the treatment of differences of sex development is early genital surgery for children with atypical genitals.
Some providers advise elective genital surgery before 6 months of age, whereas others advocate waiting until the child is old enough to decide for him or herself, or at least to participate in the decision. Debates between these schools of thought have sometimes been heated and are made more difficult by the lack of adequate outcome studies. Awareness of this problem has grown since the rise of an intersex patient movement in the mid-1990s. In the last decade, specialists in this field have slowly increased the focus on performing outcome studies intended to provide an evidence base to inform treatment decisions.
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Patient advocates have criticized many follow-up studies of infant genitoplasty, pointing out that they focus excessively on genital appearance and gender identity — factors that may seem central to parents and doctors but do not address many of the concerns that adult patients have raised. More recent studies have attempted to account for “quality of life” outcomes, such as psychological and social functioning, relationship formation, sexual function and body image. Such medical and psychological evidence will certainly be helpful. However, it does not answer the key ethical question in this debate: Is it ethically justifiable for parents and doctors to make this decision on the child’s behalf?
Some readers are probably rolling their eyes at this point, wondering where this column is leading. If measures of genital appearance, gender identity and psychosocial outcomes do not provide ethical justification for early genital surgery, what test possibly could? The answer is: the “thank you” test.
The ‘thank you’ test
The idea of a thank you test is an ethical concept that explains how we as a society justify medical treatment of people who cannot give consent. Medical treatment without consent is usually considered battery. So why can doctors treat patients who come into the emergency room unconscious? Because most people, once they become conscious, will thank the doctors for doing so — most people would want it. To be sure, a small minority of those people, given a choice, might have refused treatment for their own reasons (religious beliefs, for example, or those with a Do Not Resuscitate order). Most people, however, would want to be treated in such a situation. Treatment is more likely than non-treatment to be in line with what the patient would have chosen if she could have given consent. In other words, this intervention passes the thank you test, which provides the basis for the social contract that doctors will treat such cases even in the absence of consent.
The thank you test also underlies the ethical justification for surrogate consent, including parental consent. In a non-emergency situation in which the patient cannot give consent, doctors turn to someone close to the patient to act as a surrogate. The surrogate’s job is to determine (insofar as possible) what the patient would have wanted, and the surrogate is presumed to be the person who is best situated to make this call. Even when the decision is fairly obvious from a medical standpoint, surrogate consent is necessary. Why is this? Partly because medical criteria are not the only factors in making decisions about medical care. Personal preferences, life history, culture and many other elements also play a role. In a society (and legal system) such as ours, which places a high value on autonomy, these factors cannot be ignored.
In such situations, most patients (if and when they become competent) will be grateful for the care they received. Two-year-old children may scream and protest when given vaccinations, but when they grow to maturity, most are glad they were vaccinated. However, the ethical justification for surrogate consent would be seriously undermined if most individuals receiving a procedure later express dissatisfaction. This would be failing the thank you test.
Elective genital surgery
As many have recognized, the fact that so many adults who underwent elective genital surgery in infancy have complained raises a significant question about the ethics of these procedures for children with differences of sex development (DSD) who are too young to participate in the decision. Some commentators have brushed aside the suggestion that surgery for children with DSD should wait. Repair of other physical anomalies, such as cleft lip and clubfoot, in childhood is standard practice, so why should atypical genitals be treated differently? Of course, one important difference is that patients born with cleft lips or clubfeet have not raised an outcry about their treatments.
When I raised this question with a colleague, she asked, “But how can you know in advance who will say thank you and who won’t? What if some individuals are scarred by the experience of growing up with genital ambiguity and feel they were neglected?” It is true that we cannot know in advance which DSD patients will be grateful for surgery and which will not. However, the thank you test is not a requirement that every single patient be grateful for decisions made on his behalf. As suggested above, once in a while an unconscious Jehovah’s Witness will come into the emergency room needing a blood transfusion. If a doctor gives the transfusion, not knowing the patient’s preference, there is no ethical problem.
However, it is not enough to discount the complaints by adults with DSD by claiming, as some have, that they are an insignificant minority of disgruntled patients. This is especially true because there has been no real voice raised from the patient community advocating for these surgeries. Doctors who treat these conditions, and researchers who study them, are ethically obligated to face the question squarely. Further outcome studies will not end the debate about infant genitoplasty without addressing the key ethical outcome: Are the patients thankful in the end?
Anne Tamar-Mattis, JD, is an executive director of Advocates for Informed Choice, Cotati, Calif. She welcomes responses to this article at director@aiclegal.org.
For more information:
- Kipnis K. J Clin Ethics. 2008;9:398-410.
- Rivkees SA. Journal Pediatr Endocrinol Metab. 2006;19:1285-1289.
Disclosure: Tamar-Mattis reports no relevant financial disclosures.