ISSN 1470-3947 (print) | ISSN 1479-6848 (online)

Endocrine Abstracts (2006) 11 S80

Management of complex genital anomalies and the transition from childhood to adulthood: A patient’s perspective

PA Carmichael

Great Ormond Street Hospital, London, United Kingdom.

The way in which children with complex genital anomalies are managed is the subject of controversy and in a state of flux. The practice of early childhood genital surgery has been challenged in relation to both consent issues and functional outcomes.

For the past fifty years practice has been informed by the so called optimal gender policy which proposed that in disorders of sexual development (DSD) gender assignment should be that which allows optimal psychosexual and psychosocial functioning later in life. This approach assumes that socialisation is the decisive factor in gender identity development. In practice to support the assigned gender early feminising or masculinising surgery of the external genitalia was recommended, as was secrecy about the diagnosis such that the child could be reared unambiguously and informed gradually in line with their cognitive development. In practice many individuals with DSD were never given full information about their diagnosis and childhood surgery.

The optimal gender policy has been challenged; in particular the underlying assumption that gender identity is socially constructed. This together with adult reports about the damaging effects of secrecy and for some childhood surgery has resulted in some calling for a moratorium on all cosmetic genital surgery without consent. Parents are now routinely advised that children have the right to full details about their diagnosis and the medical and surgical management of this. Evidence suggests that parents have significant fears about the impact of ambiguous genitalia and disclosure of diagnosis on their child’s development. They are often uncertain about what to say and fear their child will blame them or develop psychological difficulties. The effects of changing and inconsistent practice across centres will present particular challenges in the future for the timing and content of information and support given to children and young people and requires careful monitoring.

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