Berenbaum: Management of Children With Intersex Conditions: Psychological and Methodological Perspectives
“Rearing children as intersex is not advocated by health professionals or activist organizations (including ISNA).” Thank you, Sheri!
“The lack of systematic outcome data makes decisions about genital surgery very difficult. There are insufficient data regarding the functional consequences of genital surgery, but there are also insufficient data regarding the effects on a child of living with atypical genitalia. It is likely that the effects of both genital surgery and genital appearance are not the same for all individuals. Perceptions of and responses to the situation may be more important than its objective nature, and psychological support may help families develop coping strategies to foster mental health. It is important to remember that decisions should be made in the best interests of the child and not the parents.”
The Current (a radio program produced by the Canadian Broadcast Corporation) looks at the controversy over intersex. Curtis Hinkle speaks about growing up with CAH, Alice Dreger and social worker Barbara Neilson discuss services for families dealing with intersex.
Listen to the program in Real Media format.
Creighton, Sarah M. and L.-M. Liao (2004). "Changing attitudes to sex assignment in intersex." BJU International 93: 659-64.
"In particular, a greater commitment to case-by- case exploration of assignment to a tentative sex of rearing and at delaying irreversible genital surgery ought to be given more consideration, with rationalized psychological backup, professional and/or lay, that is appropriate to the circumstances of patient and family."
"If this sounds experimental, sex assignment by genital surgery also represents an experiment involving invasive, risky and irreversible intervention.
Low, Y., J. Hutson, et al. (2003). "Rules for clinical diagnosis in babies with ambiguous genitalia." Journal of Pediatrics & Children's Health 39: 406-13.
Wow. The authors make clear their perspective with this, the first sentence of the article:
"Next to perinatal death, genital ambiguity is likely the most devastating condition to face any parent of a newborn."
Frankle, R. E. (2003). "Does a marriage really need sex? A critical analysis of the gender restriction on marriage." Fordham Urban Law Journal XXX: 2007-37.
"Limitations on marriage affect a greater number of people than is first evident. That is, an apparently heterosexual marriage could be successfully challenged if one person is unknowingly intersex. Confining marriage to between two people of the opposite sex leads to problems deciding what an opposite sex couple is and who defines an opposite sex couple."
Every few months, the media reports the birth or surgery of conjoined twins. But the public often does not hear how they farebeyond if they live or die after separation surgery.
MSU professor Alice Domurat Dreger at home in East Lansing. Her newest book is about conjoined twins.
That made Alice Domurat Dreger, Ph.D., a medical historian and ethicist at Michigan State University, curious. . . .
Go to article.
“Our results indicate that individuals who have had clitoral surgery are more likely than those who have not to report a complete failure to achieve orgasm and higher rates of non-sensuality—in particular, a lack of enjoyment in being caressed and in caressing their partner’s body.”
“Our findings suggest that adult sexual function could be compromised by feminising clitoral surgery. Infants and young children are powerless to oppose any procedures, so genital surgery for them is not just a medical issue but also a moral one. Debate over ethics with interested parties should be encouraged and clinicians should advance the debate and help individuals and families to make the best possible decisions by producing reliable information. Many surgeons will undoubtedly feel justified in doubting the findings of this study, and will fall back on the traditional response of claiming that current techniques are more advanced than the surgical procedures we assessed. Although surgery has advanced in many ways, this is not a valid reason for complacency. In this study surgery was done 8-40 years ago, and most individuals had undergone clitorectomy. Of the three sexually active participants who had undergone the newer technique of nerve-sparing clitoral reduction, however, two had the worst possible score for orgasm difficulties(orgasm subscale score of 9).”
Frader, J., P. Alderson, et al. (2004). "Health care professionals and intersex conditions." Archives of Pediatric and Adolescent Medicine 158: 424-8.
"None of the appearance-altering surgeries need be done urgently. Surgery to normalize appearance without the consent of the patient lacks ethical justification, in most cases. . . . The irrevocable nature of surgery should make everyone extremely cautious."
Eugster, E. (2004). "Reality vs recommendations in the care of infants with intersex conditions (invited critique)." Archives of Pediatric and Adolescent Medicine 158: 428-9.
Paediatric and Adolescent Gynaecology : A Multidisciplinary Approach. Essentially an intersex textbook with a significant emphasis on psychological care (and on issues such as psychological support) with chapters by clinical psychologists like Lih-Mei Liao, Julie Alderson and Polly Carmichael.
Balen, Adam H., Sarah M. Creighton, Melanie C. Davies, Jane MacDougall, and Richard Stanhope, eds. 2004. Paediatric and Adolescent Gynaecology : A Multidisciplinary Approach: Cambridge University Press.
But does the Urology Department listen to the Psychiatry Department?
“For children with birth defects the most rational approach at this moment is to correct promptly any of the major urological defects they face, but to postpone any decision about sexual identity until much later, while raising the child according to its genetic sex. Medical caretakers and parents can strive to make the child aware that aspects of sexual identity will emerge as he or she grows. Settling on what to do about it should await maturation and the child’s appreciation of his or her own identity.”
Paul McHugh is University Distinguished Service Professor of Psychiatry at Johns Hopkins University.