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July 13 edition of The Age, an Australian newspaper, reports about the country's scientists' discovery of the mechanism behind Swyer syndrome, or "pure XY gonadal dysgenesis," in which the patient has a 46 karyotype, female external genitalia, and streak gonads. Reporter Liz Gooch interviews two of the researchers involved in the study published earlier in Proceedings of the National Academy of Sciences, an American scholarly journal.
The discovery could be used to identify and monitor individuals with Swyer syndrome for the risk of developing gonadal cancer, for which they have a much higher than average risk, but the article describes other ways researchers think this information could be used: "We can do hormone treatments and it's possible to perform operations if people have got ambiguous genitalia so that people can have a 'normal life.'" But how can you have a "normal life" when surgeons are cutting up your genitals? How can you feel normal when doctors think that your are so abnormal that you need to be fixed by a knife? Strikingly, none of the researchers mention that social and psychological support can be made available to make it easier for people with Swyer syndrome to live with their unique bodies.
Posted by Emi on Jul 13, 2003