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Human Rights Commission should proclaim that any "normalizing" genital surgeries that are performed for the sake of parents, relatives, or others rather than in the best interest of the child (patient) are in violation of the child's human rights. Parents should not be given an unmitigated power to "consent" to such surgeries on behalf of their child because there is a clear conflict of interest between the parents and the child.
Physicians should never accommodate parents' request for "normalizing" or cosmetic surgeries on an intersex child unless evidence suggests that it would be in the best interest of the child. However, physicians routinely perform such surgeries for parents' comfort rather than that of the patient, as endorsed by some medical journal papers and medical teaching materials.
There is a conflict of interest when parents request medical procedures that are not in the best interest of the child or when parents refuse medical procedures that are in the best interest of the child. When serious conflicts of interest occur regarding a medical procedure, it is generally up to the physicians to bring the case to the attention of the Court, which would rule on the basis of what is in the best interest of the child. This legal safe harbor designed to protect children's human rights is not available for intersex children because physicians do not question parents' requests for surgery, even when the primary purpose for demanding it is to improve the parents' (and not necessarily the child's) psychological well-being and comfort.
Therefore, it is recommended that the Human Rights Commission call on the legislature to mandate judicial review (by a judge who has received a special training on intersex) before any medically unnecessary "normalizing" genital surgeries on a non-consenting child can take place. Such legislation would not prohibit "normalizing" genital surgeries in any way; instead, it puts the burden of proof on the party that seeks to impose this procedure on a non-consenting child, which is only fair considering the invasive and irreversible nature of such surgeries.
In addition, many adult intersex individuals report that the seemingly routine practice of showcasing intersex children's naked or almost naked bodies to large number of professionals, medical students and others while in the medical examination room has been sexually traumatic to them, and it should be found in violation of the child's human rights. While this practice may have some educational or training value, it is clearly against the best interest of the child/patient and must be minimized and made much more discreet and less traumatizing. For educational purposes, there are already enough video and photo materials available.
Under the U.S. legal system, "informed consent" standard is understood to mean that physicians are only required to disclose as much information as others in the same field do. While this standard may be sufficient in the treatment of most medical conditions, many parents of intersex children feel that they were deprived of the kind of information they would have wanted to know before having to make a life-altering decision of having "normalizing" surgeries performed on their children.
Medical ethicist Alice Dreger explains: "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."
While some of the recent medical journal articles call for more honest approach to treating intersex children, we still hear from parents who have received absolutely no information about risks of surgeries, non-surgical alternatives, availability of support groups, or even the fact that "normalizing" surgeries are optional and are in fact controversial. Parents want and deserve these information; the Human Rights Commission should find it a violation of patients' (and parents' by proxy) human rights to have these vital information systemically concealed from them.
We also recommend that the Human Rights Commission establish a list of criteria for which relevant information must be provided in the treatment of intersex children. The list of physicians' responsibilities may include:
In order to further ensure that every parent of intersex children receive the above information, the Human Rights Commission might consider seeking the legislature to enact a statute requiring specific list of criteria (such as the list above) for which information must be provided before any "normalizing" genital surgeries can take place on a non-consenting child. In addition to protecting intersex children's human rights, such legislation would protect honest physicians who follow the statute from possible liability by removing uncertainty around what information should be provided.
Many intersex individuals have been harmed not only by the invasive medical procedures, but by the shame, secrecy and isolation that were imposed on them through the system of humiliation and erasure. Public health administration has the obligation to end these shame, secrecy and isolation through public education, support services, and other approaches.
To that end, the Human Rights Commission should seek the City and County of San Francisco to proclaim October 26 as the Intersex Awareness Day (www.intersex-awareness-day.org) and sponsor public education events on or around that date. In addition, it should collaborate with intersex groups, public health administration, sexual and human rights groups to continue to raise the public awareness of intersex.