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Can doctors be held legally liable for performing cosmetic genital surgeries on intersex children? Not likely, most legal experts say, but as more studies challenging the standard practice emerge, it has become more risky for physicians to continue performing these surgeries.
According to Beh and Diamond (2000), the guiding principle of medical liability is that the medical community regulates itself when it comes to the medical standard. That is, individual physicians will not be held liable for causing damages as long as they are following the standard of care accepted by other physicians in their specialty.
In general, this is not a bad principle: medical standard should be determined by the medical professionals, not by politicians or by the jury. However, this creates an insentive for doctors to stick with the accepted standard and avoid alternatives even when questions are raised regarding the accepted treatment. It also means that intersex individuals are not able to sue their doctors for performing unwanted surgeries, as it is part of the accepted medical standards.
Even if the procedure itself is part of the accepted standard, a physician could be held liable for failure to abide by the informed consent standard. However this is not as easy as it seems. In the same paper cited above, Beh and Diamond discuss two competing approaches to informed consent. In the "physician-oriented" informed consent standard, a physician must disclose what other physicians in the same field would disclose; in the "patient-oriented" informed consent standard, the physician must disclose what "an individual patient reasonably needs to hear in order for that patient to make an informed and intelligent choice regarding the proposed treatment."
Further, there is an exception to the informed consent known as the "therapeutic privilege," which excuses the physician for not disclosing information if full disclosure would "pose additional health risks" such as an adverse psychosomatic reaction. Traditionally, physicians have been discouraged by the medical standard from fully disclosing information in treating intersex patients, as Alice Dreger wrote in Intersex in the Age of Ethics (1998): "Since the overarching rule of this system is 'avoid psychological confusion about the patient's gender identity,' doctors often do not tell intersexuals and their parents all that the doctors know, lest information about intersexuality confuse or complicate the family's understanding of gender." She further states, "in no other realm in medicine do doctors regularly argue for active, nearly wholesale deception."
The emergence of the intersex patients' movement and the studies showing harms of intersex surgeries have began to shift the accepted medical standard, although the vast majority of physicians continue to neglect its legal implication. For example, the latest "consensus statement" on the treatment of congenital adrenal hyperplasia (CAH) published by the Lawson Wilkins Pediatric Endocrine Society and the European Society for Paediatric Endocrinology in 2002 no longer advocates for minimal or selective sharing of information with the parents of a child with CAH: it states, "the decision about surgery should be made by the parents, together with the clinical team, after complete disclosure of all relevant clinical information and all available options have been discussed and after informed consent has been obtained." The 2003 recommendation of the British Association of Paediatric Surgeons similarly calls for the full disclosure, while upholding surgery itself as an acceptable treatment.
Arguably, doctors should not be able to get away today with what was once a standard practice ten years ago. Most telling of this new development is the paper presented at the 2002 bioethics conference by an attorney in which he argued, "traditional consent form may not be legally adequate." Attorney Glenn Burton, whose speciality is defending physicians against malpractice claims, then presented a ridiculously long and thorough "new informed consent form" that would indemnify doctors against all sorts of potential harms resulting from the genital cosmetic surgery.
Even then, it is still unclear what constitutes a legal informed consent today. If it were up to us, we believe that a full disclosure must include, at very least, the following:
Anything short of the above, as far as we are concerned, is less than full disclosure.
One of the strategies that can be used to hold physicians accountable for hiding information about intersex cosmetic surgeries is to legislate an informed consent statue. Instead of the vaguely defined unofficial standard that make it possible for doctors to leave out information that we believe are important (such as the fact that many former patients, scholars and medical professionals now question cosmetic genital surgeries on children), a statue could specify what information parents must be told before they are asked to sign the consent form to allow surgeries.
On the surface, this statue is similar to what the anti-abortion movement has successfully enacted in many states. According to the Heritage Foundation, a conservative think-tank, 27 states adopted "abortion informed consent" laws between 1992 and 2000 that require women requesting abortion to be told about "the health risks associated with abortion, the development of their unborn children, and resources for pregnant women and young mothers." Some statues also requre "waiting period" of several days before an abortion can take place. Courts have repeatedly ruled these "informed consent" statues constitutional under the "undue burden" principle set in Casey v. Planned Parenthood case in 1992.
To be clear, we at Intersex Initiative are pro-choice. While we support the idea that women requesting abortion should be informed about all the potential risks of the procedure, as they should about any procedure, we believe that the actual practice of this statue to be manipulative and anti-women. For example, many of these "resources" offered to pregnant women are pregnancy clinics and counseling centers established and operated by anti-choice groups with the sole intent to prevent abortion. Women seeking objective information about health risks would be bombarded with the sensationalistic anti-choice videos and programs designed to make them feel guilty about wanting to have an abortion instead. Frankly, we do not want to have anything to do with these despicable groups.
On the other hand, we feel that we could use the constitutionally sound model of enhanced informed consent standard to ensure that the parents of intersex children will hear all the information they deserve before making a major life-altering decision. Anti-choice groups view pregnant women as less than competent persons who must be protected from their own choice to have an abortion; we believe that most parents are reasonable and rational people who will make the best judgment for their children once doctors honetly disclose all that we know about the treatment, including both arguments for and against cosmetic genital surgeries. We do not believe that we need to resort to manipulation; we believe that objectivity and rationality will put an end to the majority of cases of intersex genital surgeries.
Another potential legislative approach to restricting intersex genital surgeries is to statutorily limit parents' authority to consent in the cases involving cosmetic genital surgeries. While parents generally have the right and responsibility to make medical decisions on behalf of their minor children, clearly they do not have the carte blanche to do as they please on their children's bodily integrity.
A possible legislation would restrict parents' authority to consent to cosmetic genital surgeries on their children; such surgery can only be performed if a judge determines it to be in the best interest of the child. This legislation ensures that surgeries will only be performed to maximize the child's quality of life, and not that of the parents.
This proposal loosely follows the same principle that the Constitutional Court of Colombia adopted in 1999: children are not the property of their parents, and as such parents do not have the carte blanche to make irreversible and potentially hazardous choices on behalf of their children. However, it may prove to be difficult to push this argument in the U.S., where there is little support for "children's rights."
We are currently seeking legal scholars, law students, activists with experience in lobbying, and others who can help us draft the legislation intended to protect the rights of intersex patients through strengthening informed consent and children's anatomical autonomy. We are not trying to ban intersex surgeries; we are seeking civil liability reform to hold physicians accountable for particularly reckless disregard of the informed consent standard and for the patient's (and not parents') quality of life.
If you have expertise in the legal or legislative arena, we need your help. Please contact us and let us know what you can contribute. Join us and take part in the history that you will be proud of.