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For the last 50 years, it has been a standard practice for doctors to withhold the diagnosis of complete androgen insensitivity from patients born with that condition. This is no longer the case: "Concealment of the diagnosis is now considered outdated... It is now established practice to disclose the genotype of complete androgen insensitivity syndrome at diagnosis," according to the authors of the newly published paper in BMJ. But how should physicians approach patients who have already been diagnosed in the past that did not get disclosed, especially if the information had been withheld for many years? That is the question Jennifer Conn and Lynn Gillam of the University of Melborne and Gerald Conway of the Middlesex Hospital in London address in "Revealing the diagnosis of androgen insensitivity syndrome in adulthood."
Authors consider factors of beneficence, non-maleficence, autonomy and justice in addressing this question. The "patient's interests would arguably best be promoted if she had a full understanding of her condition." It would, for example, make it possible for her to seek support groups for women who have the same condition. And while finding out the truth could be emotionally distressing, it would be even more traumatic if she accidentally finds out the diagnosis on her own, either on the internet or through an insensitive health care worker. The question of autonomy might appear insignificant because the patient does not have any medical decisions to make, but authors argue that her autonomy in making non-medical decisions such as whether or not to seek support groups or tell her family members about her condition should be respected. Finally, in terms of justice, she deserves as much honesty as other women who are being diagnosed today, as any of us would want to find out the truth about the condition we may have.
At one time, it was considered good medicine to withhold information from patients and their families, making up such lies like "your X chromosome has short legs" (truth: it's a Y chromosome), "your ovaries can turn malign" (truth: testes), and "your child needs a hernia surgery" (truth: gonadectomy). Today, as we move toward creating a culture of honesty, acceptance and support in intersex medicine, doctors must face up to their past dishonesty, no matter how good intentioned that dishonesty might have been.
Source:
Conn J, Gillam L, Conway GS. (2005). "Revealing the diagnosis of androgen insensitivity syndrome in adulthood." BMJ. Sep 17;331(7517):628-30.
Posted by Emi on Sep 17, 2005