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There is an interesting discussion in the July/August issue of The Hastings Center Report, published by The Hastings Center, over a complicated "case" of treating a child with intersex conditions. The child, a thirteen-year old boy, was brought in for treatment for his hypospadias, breast development, and occasional bleeding through the urethra. It turns out that the child was genotypically female (46,XX) with congenital adrenal hyperplasia, and had functioning ovaries and a uterus; the bleeding was in fact menstruation.
To make the situation more complicated, the family was from Middle Eastern background, and could not stay in the United States for much longer. Parents are requesting the removal of all female reproductive organs despite the fact that the child is fertile, as well as the bilateral mastectomy and hypospadias surgery. The boy has not been informed of his complex condition, as parents believe that the father knows what is best for the child, and that it is up to the father to make a decision on his behalf. The boy exhibits stereotypically male behaviors for his culture, and is expressing a desire for mastectomies to avoid teasing. What should physicians do?
Three parties respond to this situation. First, David Diamond considers three possible options: maintaining and enhancing the child's male appearance and identity by performing the requested surgeries, re-assigning the child to be female in order to preserve fertility, or advising the parents to defer treatment altogether until the child can make the decision himself. Diamonds concedes that the lack of the child's informed consent is problematic, but feels that it is justified to have the father make a decision to have surgeries performed on the boy to remove female reproductive organs because to do otherwise (turning the child into female or delaying treatment) might make it impossible for the family to fit into their culture.
Sharon Sytsma is also troubled by the lack of the child's informed consent, and argues that physicians should make additional efforts to convince the family to discuss the situation openly with the patient. "Given the cultural bias toward males, the parental attitudes, and the apparently consistent male gender identity and behavior, the child would probably choose not only the mastectomies... but the other surgeries and treatment as well... However, we have learned that withholding information about intersex from children is more likely to be damaging than not." In addition to discussing further with the parents, Sytsma advocates for educating "our own public--citizens and doctors--about the importance of open communication and informed consent... Doing so could have the effect of dissuading parents from other cultures seeking surgery for their children without their participation."
Lastly, intersex allies Alice Dreger and Bruce Wilson challenge how the question is framed in the first place. "The case has been understood primarily as a surgical problem... but that is the wrong way to approach intersex." Instead of focusing on whether or not to do surgery, they argue for a broader approach to treating the child, which would involve participation of pediatric psychiatry, psychology, and social work professionals. "The case description implies that, if the surgeries are done, the patient might go on in life 'cured,' never having been the wiser. But in fact, this patient will need lifelong endocrinological management, regardless of the surgeries." Thus, it is fundamentally important that the child be allowed to participate in his treatment, they argue. "In the case before us, if even with sensitive team care the parents refuse to allow the child to be consulted about his condition and treatment, the physicians should refuse to cooperate in the deception and should, if they feel the child's well-being is at serious risk, seek legal help in protecting this child from what might amount to neglect or abuse."
While I ultimately agree with Dreger and Wilson that physicians should not cooperate with deception of the patient regardless of his parents' cultural values, I find the closing statement a bit extreme and devoid of cultural sensitivity. While respecting cultural differences does not mean that we set aside our own moral or ethical convictions (such as the fundamental importance of informed consent), it does mean, in Sytsma's words, that we "try to understand why a culture values what it values, to withhold wholesale condemnation of individuals belonging to that culture for holding such values, to be open-minded to the possibility that the values of another culture may be either equally tenable or morally superior to our own, and to refrain from imposing our own values on a culture whose circumstances are such that doing so would lead to harm."
In addition to the multidisciplinary team of medical and social work professionals, I would like to see, with the permission of the parents, members of the family's ethnic and spiritual communities participate in explaining why the child deserves to know about his condition. I would also like physicians to appeal to the leaders of these communities before rushing to the legal system, especially since Middle-Eastern people and immigrants have reasons to fear and distrust American legal system due to its surveillance of Middle-Eastern communities after 9/11. Finally, the medical community needs to make further efforts to increase the number of Middle-Eastern people (and other members of marginalized communities) in the medical profession, including among medical ethicists, which will help us communicate better with patients with Middle-Eastern background and their families in the future.
- Emi Koyama, Director, Intersex Initiative
Source: "Culture clash involving intersex." Hastings Center Report. 33(4):12-14.
Posted by Emi on Aug 30, 2003