ipdxWIRE Intersex News

Beijing threatens to test Olympic athletes' genetic and chromosomal sex

According to Xinhua News Agency, China's state-operated press (07/27/2008), organizing committee for the 2008 Summer Olympics in Beijing "has set up a sex determination lab to test female Olympic athletes suspected to be males." The test would examine external appearance, hormone levels, and genetic and chromosomal status of any athlete suspected of faking her sex.

Prior to 1999, the International Olympic Committee routinely verified female athletes' chromosomal sex, but it had abandoned the practice both because it had resulted in unnecessary and unfair humiliation of women born with androgen insensitivity syndrome and other XY female conditions, and also because there is no definitive medical test that can determine who should be allowed to compete as a woman. The Beijing decision runs contrary to this recent development.

Perhaps it may be the case that the Beijing committee is simply trying to prevent non-intersex males from competing as females, and has no intention to exclude women with AIS and other similar conditions. But the result would be the same: many women would consider being treated as a "suspected male masquerading as a female" is humiliating enough.

Given the absence of any evidence that non-intersex, non-trans men are trying to compete as women (except for the fictional Bender from Futurama universe, who posed as a Robonian fembot), the impossibility of devising a definitive test to determine one's "true" sex, and the harm such test could pose to female athletes born with intersex conditions, the International Olympic Committee should go one step further and prohibit the use of genetic and chromosomal test to determine an athlete's qualification.

Atlanta police officer comes out as intersex

Southern Voice, the Atlanta-based newspaper for lesbian, gay, bisexual and trans community, has a story about Darlene Harris, an Atlanta police officer who just came out as intersex. Officer Harris is the Police liaison for the LGBT community, and she gave a presentation in which she discussed her experiences in front of approximately 20 people in a workshop.

]]> From the article:

For Harris, who has identified as female her entire life, finding out she is a male genetically felt like a burden lifted after growing up feeling so different than everyone else, even sometimes within the queer community.

"When I came out as a lesbian, the women I dated would say something's not right. I'd say I'm fine, you're just small," Harris said, referring to having an enlarged clitoris. "Of course, I said that to feel comfortable with myself."

[...]

As a child, Harris said her mom used to tell her she was "supposed to be a boy" because that's what an amniocentesis test revealed. And while her father called his other daughters "pretty," he always said Harris was his "handsome daughter."

"And that used to bug me. I didn't understand," she said.

Harris shared childhood memories of being potty-trained and always standing up to use the restroom. Her mother begged her to sit on the toilet, telling her that life would be hard if she went into a female restroom and was seen by someone else standing to urinate.

In the sixth grade, that did happen. The incident so embarrassed Harris that Harris finally learned to use the restroom sitting down.

Then there was the attraction to other girls.

"I knew I was always attracted to females growing up. It was natural to me. Mentally, when I dated women, I thought in male terms," Harris said.

Since Harris was in junior high school, she has been able to grow a full beard and moustache and shaves every day. She said she also grows excessive hair on her chest and stomach--signs that someone might be intersex. Her enlarged clitoris, or micro-penis, was also a sign. But never knowing what being intersex was or having anyone to talk with about what she was going through caused Harris to keep her confusion stuffed inside.

"The reason I'm here is this is a healing process for me. It's important to share my story," Harris said.

"Growing up, not knowing what was going on, was hard. There was something not right. Now I know all the things I felt growing up weren't me just bugging out," Harris said. "If I can help just one person, this is worth it."

ISNA closes its doors; Accord Alliance continues to promote changes in medical treatment

As of this week, Intersex Society of North America has officially closed its doors. Founded in 1993, ISNA was the first North American organization to advocate for the rights of people born with intersex conditions, and for more honest, less invasive medical treatment of intersex children. ISNA's farewell message addressed to its friends and supporters can be found on www.isna.org.

The organization explains: "we finally have consensus on improvements to care for which we have advocated for so long, but we lack a consistent way to implement, monitor, and evaluate them. [...] Unfortunately, ISNA is considerably hamstrung in being able to fulfill this role. [...] there is concern among many healthcare professionals, parents, and mainstream healthcare system funders that ISNA's views are biased or that an association with ISNA will be frowned upon by colleagues and peers." In order to get away from this "baggage," so to speak, and to become regarded as professional, those involved in ISNA have chosen to form a different organization, the Accord Alliance.

Accord Alliance's mission states that the organization works to "promote comprehensive and integrated approaches to care that enhance the health and well-being of people and families affected by DSD [disorders of sex development] by fostering collaboration among all stakeholders." There is a concern, however, how much voice intersex adults will have in this "collaboration," as the new organization focuses on working with healthcare providers and parents, especially with the almost complete disappearance of the word "intersex" from its website.

We are still evaluating how ISNA's closure will affect us. Please let us know your thoughts and concerns.

Johns Hopkins study: Vaginal Reconstruction Unnecessary for most women with CAIS

Researchers from Johns Hopkins University, the historical root of cosmetic genital surgeries for children with intersex conditions, now argue that vaginal reconstruction surgery is not needed for most girls born with complete androgen insensitivity syndrome. Research is done by Todd Purves, Jennifer Miles-Thomas, Claude Midgeon, and John Gearhart, and will be presented at the American Academy of Pediatrics this weekend.

The study compared 18 women who received genital surgeries with 11 who did not, and found that their rates of sexual activity were similar. "It is a common misconception in the general public--and quite often among doctors--that most girls born with this condition should have vaginal reconstruction in order to be sexually active," said Purves, as if his mentors at Johns Hopkins University weren't responsible for spreading such misconceptions. "Our findings show that, on the contrary, most young women choose not to have the surgery, have vaginal depths that are within normal parameters and can lead active sexual lives."

Alternative to Shame and Secrecy is Possible

This is incredible. In India, the birth of an infant with an intersex condition is being celebrated as "an incarnation of Hindu gods Shiva and Parvati," according to New Post (07/26/2007). The baby is now over five months old, and hundreds of people are gathering to see her/him and to offer prayers. Plus, the baby seems to have an enlightened gynecologist and receiving good care...

I'm not suggesting that we, too, should start worshipping our intersex children as incarnations of gods (on the second thought...), but this news from India clearly shows that things could be different for intersex children in the U.S., who are often trapped in the cycle of secrecy and shame.

Info for Oprah fans after reading "Middlesex"

Word has that Oprah picked Jeffrey Eugenides' Pulitzer-winning novel, "Middlesex," as the latest addition to Oprah's Book Club. We've created a little FAQ about "Middlesex" for those googling for more information about intersex after reading the book. As always, email us if you have any feedback.

How the Controversy over the "Growth Attenuation" for Children with Severe Developmental Disabilities is Relevant to Intersex Activism

On May 16, 2007, a symposium on "growth attenuation" therapy for children with severe developmental disabilities was held at University of Seattle. The case involves a series of medical treatments in which in which a 6-year old girl with severe developmental disabilities had her growth hormonally stopped, hysterectomy performed, and also had breast buds removed, so that she will remain in childlike size and shape for the rest of her life. While the symposium is not specifically related to intersex, it raised many of the issues that are relevant to the ethics of intersex medical treatment, namely: degree to which parents can exercise medical decision-making powers on behalf of their children, legal and policy frameworks for protecting children's right to bodily integrity, the problem with the use of medical technologies as the solution to social issues, etc. You can read a full, detailed review of the symposium on Emi's blog.

Request for Input: Frequently Asked Questions about the "DSD" Controversy

Lately there has been a lot of discussions and debates over the introduction of the new medical terminology, "disorders of sex development" (DSD), and its relative merits and disadvantages over "intersex." We've drafted a "frequently asked questions" to understand various viewpoints in this debate, and need your feedback! Please read the draft, and let us know what you think!

Doctor Disciplined for Removing Healthy Ovaries

According to Start Tribune (Twin Cities, Minnesota), a urologist at the University of Minnesota has been disciplined by the Minnesota Board of Medical Practice removing healthy ovaries from a 7 year old girl. Dr. Michael Wipf apparently mistook the girl's ovaries to be abnormal during "corrective surgery for her urinary problems," but had neglected to order biopsy to confirm his observation.

]]> The hastiness with which important medical decisions are made and surgeries are performed on this girl without concrete evidence indicating the necessity to do so is consistent with other ways children with intersex and other "abnormalities" are treated within the medical system. Dr. Wipf was reprimanded because the removed body part happened to be perfectly normal, but such "mistakes" are inevitable as long as doctors routinely make such decisions without consulting all evidences.

Source:
Lerner M. 2006. "St. Paul doctor disciplined by state board." Minneapolis Star Tribune. November 21.

From Intersex to DSD: Read Emi Koyama's Keynote Speech

This past February, Intersex Initiative director Emi Koyama gave the keynote lecture at Translating Identity conference at University of Vermont. The lecture, titled "From Intersex to DSD: Toward a Queer Disability Politics of Gender," is about the recent introduction of the term DSD (disorders of sex development) to replace "intersex" within the medical community, and how Koyama has come to endorse it despite some concerns from other activists. We now have the full text of the lecture available here.

Parents vs. the State in Teen's Cancer Treatment

Parents of a 13-year old girl with Hodgkin's disease, a cancer that targets lynphatic tissues, is in a legal battle with the State of Texas over her treatment, according to the latest Associated Press story. The patient was diagnosed with the disease in January and has received chemotherapy, but the parents came to believe that continued radiation therapy, which was recommended by the doctors, would do more harm than good.

]]> "After a doctor informed Child Protective Services that her parents were interfering with treatment," the mother fled with the child, "prompting the state to take custody of the girl," according to the AP story. The parents are seeking the Court's permission to take the girl to a treatment center in Kansas that would perform intravenous Vitamin C treatment--an "alternative" considered worthless by most physicians. Last week, a District Judge ruled that the girl must undergo chemotherapy first.

Clearly, parents have genuine and understandable concerns about and distrust for the drastic radiation therapy, but the current medical knowledge does not support their choice to put their daughter through a Vitamin C treatment only. The state also has a clear interest in protecting the child from parents' misguided and harmful medical decisions, but the instruments of the state that is readily available--the Child Protective Services--is too extreme and ineffective at addressing the child's best interest in medical decision-making. As a less drastic alternative, Judge should have appointed a medically knowledgeable case worker to represent the interest of the child foremost and allow that person to negotiate with both parents and physicians.

Activists and Professionals Call for A New Classification System for Intersex

In the position paper published in the recent issue of Journal of Pediatric Endocrinology and Metabolism, intersex activists (Alice Dreger and Cheryl Chase) and expert physicians join together in calling for changing the taxonomy of intersex conditions. The current taxonomy, which divides intersex conditions to three categories ("female pseudohermaphroditism," "male pseudohermaphroditism," and "true hermaphroditism") was developed in the late 19th century, when doctors believed that one's gonads (testes or ovaries) determined her or his "true sex." That belief was abandoned in the 20th century in favour of John Money's controversial and later rejected theory that one can be raised as a boy or a girl regardless of the gonads. The gonad-based system from the Victorian era lost all of its usefulness at that point, but somehow it survived until now.

]]> In addition to being clinically useless, the old taxonomy is criticised because it is stigmatising. The word "hermaphrodite" misleads people into thinking that the existence of intersex people are just a myth, or worse, that intersex people are the mythical "hermaphroditic" creatures complete with two sets of genitalia (which isn't true). Further, the distinction between "true" and "pseudo" hermaphroditism establishes meaningless ranking of severity. Dreger, Chase and others argue that all terms based on the root "hermaphrodite" should be removed from the medical language describing intersexuality.

Source:
Dreger AD, Chase C, Sousa A, Gruppuso PA, Frader J (2005). "Changing the nomenclature/taxonomy for intersex: a scientific and clinical rationale." Journal of Pediatric Endocrinology and Metabolism. Aug;18(8):729-33. Also see the response by Houk CP, Lee PA, Rapaport R.

Diagnoses for Women with XY Karyotype Unreliable

A new study published in BJOG: An International Journal of Obstetrics & Gynaecology confirms what many advocates have suspected: women who have complete or mosaic XY karyotype are often misdiagnosed. Intersex medicine experts from the Middlesex Clinic, Elizabeth Garrett Anderson Hospital of the University College London Hospitals collected data for forty-six adult XY women to assign best possible diagnoses, then compared them to the diagnoses these women had previously received elsewhere.

]]> According to the study, less than half of the diagnosis given to the participants could be confirmed by the experts, while a large portion of the rest being inaccurate (6.5% of the women could not be diagnosed one way or another).

Researchers warn: "Assigning the wrong diagnosis may be harmful, for example, if it leads to irreversible virilising changes or development of a gonadal malignancy, and for all cases excludes accurate condition management and genetic counselling for both the patient and their immediate family."

Source:
Minto CL, Crouch NS, Conway GS & Creighton SM. (2005) "XY females: revisiting the diagnosis." BJOG: An International Journal of Obstetrics & Gynaecology 112 (10), 1407-1410.

Non-Disclosure of CAIS Diagnosis is No Longer Acceptable

For the last 50 years, it has been a standard practice for doctors to withhold the diagnosis of complete androgen insensitivity from patients born with that condition. This is no longer the case: "Concealment of the diagnosis is now considered outdated... It is now established practice to disclose the genotype of complete androgen insensitivity syndrome at diagnosis," according to the authors of the newly published paper in BMJ. But how should physicians approach patients who have already been diagnosed in the past that did not get disclosed, especially if the information had been withheld for many years? That is the question Jennifer Conn and Lynn Gillam of the University of Melborne and Gerald Conway of the Middlesex Hospital in London address in "Revealing the diagnosis of androgen insensitivity syndrome in adulthood."

]]> Authors consider factors of beneficence, non-maleficence, autonomy and justice in addressing this question. The "patient's interests would arguably best be promoted if she had a full understanding of her condition." It would, for example, make it possible for her to seek support groups for women who have the same condition. And while finding out the truth could be emotionally distressing, it would be even more traumatic if she accidentally finds out the diagnosis on her own, either on the internet or through an insensitive health care worker. The question of autonomy might appear insignificant because the patient does not have any medical decisions to make, but authors argue that her autonomy in making non-medical decisions such as whether or not to seek support groups or tell her family members about her condition should be respected. Finally, in terms of justice, she deserves as much honesty as other women who are being diagnosed today, as any of us would want to find out the truth about the condition we may have.

At one time, it was considered good medicine to withhold information from patients and their families, making up such lies like "your X chromosome has short legs" (truth: it's a Y chromosome), "your ovaries can turn malign" (truth: testes), and "your child needs a hernia surgery" (truth: gonadectomy). Today, as we move toward creating a culture of honesty, acceptance and support in intersex medicine, doctors must face up to their past dishonesty, no matter how good intentioned that dishonesty might have been.

Source:
Conn J, Gillam L, Conway GS. (2005). "Revealing the diagnosis of androgen insensitivity syndrome in adulthood." BMJ. Sep 17;331(7517):628-30.

"Non-Medical Reasons" for Early Surgery: Unproven and Unethical

In the February 2005 issue of Journal of Pediatric and Adolescent Gynecology, gynecologist Sarah Creighton and pediatric urologist Walid Farhat offer competing views on whether feminizing genital surgeries should be performed early or it should be delayed until the patient is old enough to consent to it.

]]> Creighton, while admitting that evidence is still inconclusive, insist that the "review of the current liteerature does not support the use of feminizing infant genitoplasty as an effective treatment for stable gender or psychosexual development." Creighton points out that young girls have no use for "functional" vagina until they start menstruation or having intercourse, and argues that by delaying the vaginoplasty we could reduce the total number of operations needed to achieve vaginal length, while reducing risk of stenosis and give patients greater control over their lives. Regarding clitoral reduction/recession surgeries, Creighton stops short of arguing against it but stresses that families need to be aware of the damages clitoral surgeries may cause to the child's sexual functioning.

Farhat on the other hand argues that there is not enough evidence for "recommending a systematic policy change at this stage." Farhat discusses that there are non-medical reasons for the early intervention, such as "lessening the mental anguish of the parents about their anomalous child" and "the assumption that the child may not remember being born with a genital anomaly." "Both these assumptions have yet to be proven," admits Farhat, but there are some things seriously wrong with these assumptions as reasons for early intervention even if they were proven to be true.

First, surgeries on a child should only be performed if doctors feel that it is in the best interest of the child. That the procedure might help someone other than the patient does not justify performing such invasive and irreversible surgery on the child. Mental anguish experienced by the parents is a real clinical concern, and it should be dealt as a psychological need rather than a justification to alter the child's genitalia.

Second, the idea it is better to keep the child in the dark about the condition they were born with seems like a plan to deprive patients from learning about our own bodies and managing our health with all the knowledge that we can find. In fact, it's a return to the 1950s when secrecy and deception were endorsed as a treatment protocol in dealing with intersex patients under the belief that ignorance is a bliss. One of the most significant victories for the intersex movement has been that medical associations such as American Academy of Pediatrics no longer openly advocate for secrecy and deception--but some doctors still think that secrecy is a good practice, apparently.

In the end, Farhat states "we recommend that assignment of gender be done on an individual basis." Of course, the actual practice should always be done on an individual basis. But we are recently finding out that when doctors say "on an individual basis" in regards to intersex treatment, they don't really mean "on the basis of individual patients' needs and circumstances." What they actually mean is "on the basis of what patients' parents want and need." But why is it always about the parents? If any surgeries were to happen, we'd like it to be because the best available evidence suggested that surgery is in the best interest of the child, at least in the minds of the doctors performing it, and not simply because parents demanded it.

Source:

Creighton SM (2005). "Early intervention of CAH surgical management." Journal of Pediatric and Adolescent Gynecology. 18(1):63-66.

Farhat WA (2005). "Early intervention of CAH surgical management." Journal of Pediatric and Adolescent Gynecology. 18(1):66-9.