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In the paper published in Journal of Pediatrics (June 2004; vol. 144, no. 6), Penn State University psychologist Sheri Berenbaum and others report that children and young adults who have congenital adrenal hyperplasia do not show any more psychological problems compared to their siblings and relatives of similar age. Authors claim that the data indicate that psychological adjustment is not negatively affected by either the condition itself or its treatment, which often includes clitoral recession and vaginoplasty surgeries in girls with CAH. Astonishingly, however, the research omits investigation of the psychological aspect of sexual functioning as experienced by women whose genitals have been repeatedly operated.
In addition, the instruments being used to examine psychological adjustment are designed to detect psychological pathologies, and not necessarily harms to one's quality of life. In fact, most people who experience traumatic events do not exhibit any detectible "psychological adjustment" problems in the long-term, but that obviously does not mean that their lives are unaffected by the traumatic events or that their quality of life do not suffer because of them. It would be a stretch to use this data to claim that surgeries and other invasive medical treatment is harmless to children born with CAH.
And besides, that is not how medicine is done. You do not perform medically unnecessary procedures on a non-consenting child just because it does not cause adjustment issues; you do so only when there is a medical need that can be alleviated by the procedure. Showing that the treatment does not result in psychological dysfunction is not enough to justify it; they must first show that children experience dysfunction without the treatment.
In conclusion, authors state that "these data strongly suggest that the presence of this intersex condition per se does not place a child at risk of psychologic disturbance." I hope that this is how medical professionals would interpret the finding, but they could also argue that the study did not find any psychological disturbance because most of the patients with atypical genitalia received surgeries to fix them. We hope that future researches would be designed so that they can separate harms caused by the condition itself (if any) and those caused by the treatment.
Source:
Berenbaum SA, et al. (2004). "Psychological adjustment in children and adults with congenital adrenal hyperplasia." Journal of Pediatrics. 144(6):741-746.
Posted by Emi on Jun 13, 2004