Intersex Society of North America - Recent Publications

Berenbaum: Management of Children With Intersex Conditions: Psychological and Methodological Perspectives

Fri, 15 Apr 2005 16:43:51 -0700

“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.”

Canadian Broadcast Corporation addresses intersex

Fri, 20 Aug 2004 12:04:50 -0700

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.

Changing attitudes to sex assignment in intersex (Creighton and Liao)

Mon, 7 Jun 2004 11:28:36 -0700

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.

Clinicians liken intersex to neonatal death

Wed, 9 Jun 2004 11:44:34 -0700

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."

Contested definition of marriage affects intersex people

Mon, 7 Jun 2004 14:03:27 -0700

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."

Detroit Free Press appreciates Dreger's work

Mon, 19 Jul 2004 12:16:10 -0700

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.

Effects of Clitoral Surgery (Minto et al)

Wed, 2 Feb 2005 21:08:06 -0800

“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).”

Ethicists call for change in medical management of intersex conditions

Sat, 10 Jul 2004 15:43:02 -0700

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.

Finally: A progressive medical text on intersex issues!

Tue, 26 Sep 2006 10:05:48 -0700

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.

Order from Amazon.

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.

Former Hopkins Psychiatry Director Condemns Sex Reassignments

Tue, 8 Feb 2005 09:12:41 -0800

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.

Fuzzy math in Journal of Urology

Mon, 7 Jun 2004 12:09:36 -0700

Meyer-Bahlburg, H. F. L., C. J. Migeon, et al. (2004). "Attitudes of adult 46,xy intersex persons to clinical management policies." Journal of Urology 171: 1615-9.

Well, we are pleased that some clinicians are starting to try to talk to their former patients. But they continue to confuse sex assignment and early genital surgery, to use the anachronistic term "unfinished" when referring to genitals with atypical appearance, to imply that any change in policy would require inventing a third sex. Finally, the authors apparently believe that if a simple majority of patients are satisfied with the gender assigned, then current policies are justified and no reform is needed.

Georgetown Law Journal on intersex

Mon, 7 Jun 2004 11:51:37 -0700

Lareau, A. C. (2003). "Who decides? Genital-normalizing surgery on intersexed infants." Georgetown Law Journal.

"Those who promote informed consent should recognize the risks and deficiencies in such an approach. Most importantly, efforts such as the ABA resolution should be rephrased to prevent the medical community from construing it as an official legal endorsement of the current treatment model. Such an endorsement could stagnate medical research into the necessity of genital- normalizing surgery, allowing surgeons to simply explain the current lack of knowledge and rely on parents to make a decision."

Getting Rid of "Hermaphroditism" Once and For All

Mon, 28 Nov 2005 13:35:52 -0800

A new article just published in the Journal of Pediatric Endocrinology and Metabolism makes a compelling case for getting rid of all medical terms based on the root “hermaphrodite.” The authors (including two ISNA staff members and three ISNA Medical Advisory Board members) explain the problems with terms like “pseudo-hermaphroditism” and “true hermaphroditism.”

Why get rid of these terms? Because:

These terms are stigmatizing to patients and their families. We should all be working to reduce stigma, not add to it through medical care.

Intersex and Female Genital Cutting

Tue, 20 Dec 2005 16:50:47 -0800

The Winter 2005 issue of the Harvard Civil Rights-Civil Liberties Law Review features an article about intersex. The article, entitled Intersex Surgery, Female Genital Cutting, and the Selective Condemnation of ‘Cultural Practices’, discusses the similarities between female genital cutting (FGC) in African and Asian countries and the cosmetic genital surgeries performed on intersex infants in the West. Written by Nancy Ehrenreich with Mark Barr, the article suggests that although people in the West often medicalize the cosmetic genital surgeries currently performed that these procedures, much like FGC, have cultural roots.

ISNA Discussed in "Savage Love"

Tue, 20 Apr 2004 16:49:12 -0700

ISNA is mentioned in the famous "Savage Love" advice column of April 14, 2004.

The issue mentioned is familiar: an adult born with intersex who was "sex reassigned" to be female as a child, now wishing the parts s/he was born with were still there.

I've written a note of thanks to Dan Savage ("Savage Love" columnist) and asked him to clarify one thing:

Intersex conditions DO sometimes come with serious underlying health concerns. Therefore anyone who thinks s/he is intersex or that his/her child is intersex SHOULD seek medical advice to rule out (or address) health problems. We do not hesitate to recommend surgeries that address serious health problems (as when a child is born with intersex and no urinary outlet).