Recent Publications

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

Submitted by ISNA on Fri, 09/17/2004 - 11:09.

Classification: Recent Publications

“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

Classification: Recent Publications


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)

Classification: Recent Publications

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

Classification: Recent Publications

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

Classification: Law | Recent Publications

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

Classification: Recent Publications

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)

Submitted by ISNA on Fri, 09/17/2004 - 19:26.

Classification: Recent Publications | What We're Reading

“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

Classification: Recent Publications

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!

Submitted by Cheryl Chase on Tue, 09/14/2004 - 10:59.

Classification: Books | Recent Publications | What We're Reading

cover of Paediatric and Adolescent Gynaecology : A Multidisciplinary Approach

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.

Former Hopkins Psychiatry Director Condemns Sex Reassignments

Submitted by Cheryl Chase on Fri, 12/10/2004 - 11:52.

Classification: News | Recent Publications

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

Classification: Recent Publications

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

Classification: Recent Publications

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

Submitted by April Herndon on Fri, 11/11/2005 - 15:14.

Classification: News | Recent Publications

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

Submitted by April Herndon on Tue, 12/20/2005 - 09:37.

Classification: Recent Publications

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"

Submitted by Alice Dreger on Thu, 04/15/2004 - 04:08.

Classification: Recent Publications

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).

Law and Order SVU does John/Joan story

Submitted by Cheryl Chase on Wed, 01/19/2005 - 17:15.

Classification: News | Recent Publications

On Jan. 18, 2005 NBC aired an episode (“Identity”) of Law & Order SVU closely mimicking David Reimer’s story (“the John/Joan case”) as a plot, right down to a vaporized penis, quotes like “easier to dig a hole than build a pole,” secrets and lies and a very unsavory representation of a doctor implicitly modeled after John Money. (Note that John Money is actually a psychologist, not a medical doctor.) If you see it pop up on the tv schedule in re-runs (often on the USA Network), check it out.

Lifting the Curse

Classification: Recent Publications

Groveman, S.A. 2001. Lifting the Curse (letter). Discover, March.

"The Curse of the Garcias" [Vital Signs, December] tells readers about the rare medical condition androgen insensitivity syndrome (AIS). Unfortunately, the one person author Dr. Robert Marion chose not to so educate was his own patient. While Dr. Marion may think he was protecting her by withholding information, he instead placed her at risk of discovering it on her own without appropriate support or counseling. I know how devastating such a discovery can be—I, too, have AIS. And I, too, did not learn about my condition from my physician; I uncovered the truth in a public medical library. Dr. Marion's approach doesn't ensure that his patient won't make a similar discovery. In any event, it denies her the right to make informed choices about her medical care.

Middlesex reviewed in medical journal

Classification: Recent Publications

Bergman, A. (2004). "Middlesex (Book Review)." Archives of Pediatric and Adolescent Medicine 158(5): 500.

"Yes, it is fiction, but I cannot imagine a more authentic and sensitive voice. Because our interactions
usually take place in limited and structured settings such as offices and hospitals, pediatricians have scant opportunity to learn how our young patients think. One way to sharpen our awareness is to listen to children’s voices as they are expressed in books. In Middlesex, the voice is loud and clear."

Miki Ann Dimarco confined in isolation because she's intersexed

Submitted by Cheryl Chase on Thu, 12/09/2004 - 17:11.

Classification: Law | News | Recent Publications

The Casper Wyoming Star Tribune is carrying an article about Miki Ann Dimarco. Early this year, a U.S. District Court judge found that 438 days of confinement in Pod Three, a maximum security four-cell segregated area that is used to house the Wyoming Women’s Center worst inmates, was not cruel an unusual punishment. Dimarco was found guilty of passing six bad checks, totalling $742.85. That’s not why she was confined all alone for over a year. Rather, prison officials decided to segregate her when they discovered that she was intersexed.

Dusen, Matthew Van. 2004. Separate and Unequal. Casper Star Tribune, December 8. Available online.

Physician's Rhetoric and Intersex Management

Submitted by ISNA on Tue, 09/14/2004 - 09:46.

Classification: Recent Publications

Hester, J. David. 2004. Intersex(es) and alternative strategies of healing. Ethik in der Medizin 16:48-67.
———. 2004. Intersex(es) and informed consent: how physicians' rhetoric constrains choice. Theoretical Medicine 25:21-49.
———. 2003. Rhetoric of the medical management of intersexed children. Genders 38. Available from https://www.genders.org/g38/g38_hester.html.

Reiner & Gearhart's NEJM Study on Cloacal Exstrophy - Review by Vernon Rosario, M.D., Ph.D.

Submitted by Alice Dreger on Mon, 03/29/2004 - 14:00.

Classification: Recent Publications

The following review comes from Vernon A. Rosario, M.D., Ph.D., former Chair of ISNA's Medical Advisory Board.

REVIEW BY VERNON ROSARIO:

Long-time ISNA friend and supporter Dr. William G. Reiner recently published a groundbreaking article with Dr. John P. Gearhart that gives further evidentiary support to ISNA’s mission. The article, “Discordant Sexual Identity in Some Genetic Males with Cloacal Exstrophy Assigned to Female Sex at Birth” was published in the prestigious New England Journal of Medicine (vol. 350, Jan. 22, 2004). They described a long-term follow-up study of a group of 16 chromosomally male (XY) individuals born with cloacal exstrophy. This is a rare birth defect affecting 1 in 400,000 live births—slightly more common in males then females. It is an anatomical defect beginning early in embryonic development and the most severe manifestation in the spectrum of exstrophy-epispadias (congenital anomalies of the bladder, genitals, and pelvis). The abdomen is not closed, thus exposing the gastrointestinal tract and urinary bladder. Frequently the intestine is shortened and malformed with the bladder. The anus may also not be open. In females, the clitoris may be split and there can be two vaginal openings. In males, the penis is short and flat, split in two, or entirely absent. It is frequently associated with abnormal kidney and spinal development (spina bifida, scoliosis, meningocele). The cause is unknown and there is no known means of prevention.

Sacramento Bee looks into intersex

Submitted by ISNA on Tue, 04/20/2004 - 15:43.

Classification: Recent Publications

The medical profession has traditionally viewed an intersex birth as a "social emergency," pushing to assign a child's sex immediately and perform corrective surgery as soon as possible, says Celia Kaye, a professor of pediatrics at the University of Texas Health Science Center at San Antonio. Doctors want to avoid traumatizing parents and help the child grow up normally, without confusion or ridicule, she says.

Read the complete article at the Sacramento Bee.

Seven Oaks Magazine interviews Alice Dreger

Submitted by Cheryl Chase on Tue, 06/22/2004 - 07:46.

Classification: Recent Publications

Seven Oaks Magazine interviewed ISNA's board chair Alice Dreger earlier this month.

Hui, Stephen. 2004. SEVEN QUESTIONS: Alice Dreger. Seven Oaks, June 7. Available from https://www.sevenoaksmag.com/questions/16.html.

Slate documents changes in medical management of intersex

Classification: Recent Publications

"Unless they're born in Texas," notes Slate journalist Claudia Kolker, "the great majority of ambiguous-looking babies will still be 'normalized' with radical, irrevocable surgery in their first year of life. But the anecdotal and scientific evidence is making it increasingly clear that this approach, which once seemed obvious, is not in every child's best interest."

Read Kolker's article The Cutting Edge at Slate.

Soundprint Radio looks at intersex

Submitted by ISNA on Thu, 09/30/2004 - 11:04.

Classification: Recent Publications

Intersex, a 30 minute radio program produced by Dheera Sujan of Radio Netherlands is part of Soundprint’s international documentary exchange series, Crossing Boundaries. Listen online in Real Player format as a group of women with AIS talk about their lives.

“Not telling people about your condition is more difficult than having the condition itself.”

“We appeared on tv as a kind of protest against doctors who are still saying that no one should talk about this. We showed them that we can tell 900,000 people about it, and nothing bad happened to us. In fact, we had nothing but positive reactions.”

The Management of Ambiguous Genitalia. Proceedings of a symposium. Lyon, France, April 2003

Submitted by ISNA on Fri, 07/23/2004 - 12:55.

Classification: Recent Publications

Another special issue on intersex. See table of contents at the BJU International (British Journal of Urology).

Most anguished title award goes to "How to make the least bad choice in children with ambiguous genitalia", by P.D.E. Mouriquand.

The Self I Will Never Know

Classification: Recent Publications

"There are times when I wish I didn’t know so much. And I realize that what I know, I learned too late. Reclaiming a childhood of medicalization can be challenging at best, but key to my survival. The challenge is not that I was born with atypical reproductive anatomy – but the power of others to question and correct my natural anatomy." Read The Self I Will Never Know, by ISNA board member Esther Morris, in The New Internationalist V. 364 Jan/Feb 2004.

Washington Square News looks at Intersex

Submitted by Cheryl Chase on Tue, 10/26/2004 - 08:29.

Classification: News | Recent Publications

In her early 30s, Betsy Driver learned why she had never felt totally comfortable in her high school locker room.

When she four months old, Driver’s doctors removed her entire clitoris because it was unusually large for a baby girl, and, following doctor’s orders, her mother never told her. As a teenager, Driver never fully developed breasts and had to undergo a second surgery to reconstruct a vagina that was never there in the first place …

Llerena, Kim. 2004. Living in between, but no longer living in silence. Washington Square News, October 26.

Welcome, New York Times Readers!

Classification: Recent Publications

ISNA is covered in an excellent New York Times article on the controversy over intersex surgeries. Practice is changing!

Navarro, Mireya. 2004. When Gender Isn’t a Given. New York Times, September 19, Styles 1, 6. Available from https://www.nytimes.com/2004/09/19/fashion/19INTE.html.

What is the agenda of the intersex patient advocacy movement?

Submitted by Cheryl Chase on Wed, 06/23/2004 - 13:21.

Classification: About | Recent Publications

Presented at the First World Congress: Hormonal and Genetic Basis of Sexual Differentiation Disorders, Tempe Arizona, May 17-18 2002

Chase, Cheryl. "What is the Agenda of the Intersex Patient Advocacy Movement?" Endocrinologist. 13(3):240-242, May/June 2003. Download pdf version.

Today, almost a decade after the Intersex Society of North America was founded, many people still misunderstand what criticisms the intersex patient advocacy movement makes of standard practice, and what reforms we are asking for. I’m pleased to have this opportunity to provide a summary of our recommendations for patient-centered care, and to contrast them with the current state of medical practice.

Who Will Make Room for the Intersexed?

Submitted by Cheryl Chase on Mon, 01/17/2005 - 10:56.

Classification: News | Recent Publications

Haas, Kate. 2004. Who Will Make Room for the Intersexed? American Society of Law, Medicine, and Ethics 30 (1):41-68. Available from https://www.cirp.org/library/legal/USA/haas1/.

Young Adult Novel Features Intersex Character

Classification: News | Recent Publications

We’re pleased to announce the publication of Fool for Love by Lisa Lees.

Lisa Lees is a long time ISNA supporter and Fool for Love is a young adult novel that offers a realistic and caring narrative about a high school student named Jami and her partner Carys.

In a world where representations matter and many young intersex and/or queer people seldom see themselves reflected in characters in literature or film, Fool for Love centers Jami’s experience with her intersex condition, highlighting her loving relationships with her parents and her partner as well as her struggles against people’s homophobic attitudes and misunderstanding of what it means to have an intersex condition. In addition, Fool for Love weaves references to ISNA, Hermaphrodites with Attitude, and PFLAG throughout its narrative, offering young readers useful information about where they might learn more about these issues and even find support and allies.

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