After the very public mess involving South African runner Caster Semenya and her supposed (but not officially confirmed) intersex status, International Olympic Committee has convened a symposium this past January and issued a summary of recommendations for how intersex athletes should be treated. The recommendations, which is still currently being finalised, are:

• That sport authorities, in conjunction with the relevant medical authorities, have a responsibility to follow up on cases of DSD [disorder of sex development] that arise under their jurisdiction
• That there be an increase in education and awareness of DSD within the sport community
• That PPHE (pre participation health examinations) are important for the purpose of identifying athletes with DSD
• That precise diagnosis should be established expeditiously utilizing requisite expertise
• That a management plan be drawn up if treatment is necessary (recommended)
• To establish strategically located centres of excellence at which athletes with DSD can, if necessary, be diagnosed and treated
• That rules be put in place to determine eligibility of athletes for sport competition on a case-by-case basis both prior to and following diagnosis of a DSD, including when an athlete is undergoing treatment for DSD or refuses treatment for a DSD

An increase in education and awareness is certainly welcome, but it appears that IOC is overstepping its role as an athletic authority when it prescribes recommendations for how athletes' medical conditions should be managed or treated.

Further, those involved in the process have been quoted in the media that their view is that athletes with intersex conditions should be allowed to compete if they are being treated for them, establishing a new requirement that only applies to intersex athletes (that is, other athletes could follow or refuse medical advice without fear of being disqualified by the IOC).

In Women's Bioethics Project, Elizabeth Ries, a University of Oregon historian and the author of Bodies in Doubt: An American History of Intersex asks an interesting question: "Is Intersex a Disorder or a Competitive Advantage?"

Also, intersex activist and writer Hida Viloria has written a petition demanding OIC to stop excluding and stigmatizing intersex athletes, which can be found here.

Posted by Emi on Mar 19, 2010

The campaign against the large-scale prenatal administration of off-label medication designed to prevent "genital virilization" (enlargement of clitoris) among female fetuses with congenital adrenal hyperplasia (CAH) is building a momentum.

The questionable practice involves the off-label prenatal administration of dexamethasone, a synthetic hormone, to women who are carrying a fetus suspected of having congenital adrenal hyperplasia (CAH). While CAH often requires life-long monitoring and medication, the prenatal dexamethasone treatment does not alter any of the medical concerns; it is solely intended to address a cosmetic issue, which is to prevent the fetus girls from developing an enlarged clitoris. In fact, the treatment is terminated when the fetus is found to be genetically male.

Earlier this month, a group of bioethicists and other scholars signed a letter of concern to Federal Drugs Administration, Department of Health and Human Services, and other authorities, suggesting that the practice amount to an unapproved human subject research in violation of established standards. Advocates for Informed Choice, a legal organization working for children born with intersex conditions and their families followed with its own letter of concern, as did a group of adult intersex activists.

Additionally, Hilde Lindemann, Ellen Feder and Alice Dreger have written an article for Bioethics Forum, an online publication of Hastings Center, which also published Intersex Initiative director Emi Koyama's essay on bioethics, which seeks to put the controversy in a larger context.

For more information, read fetaldex.org, a site created by Alice Dreger to provide information about this problematic practice and challenges against it.

Update (Oct. 2010): Endocrine Society issued a recommendation against prenatal dexamethasone treatment for fetuses suspected of having CAH. Read more at Endocrine Today.

Posted by Emi on Feb 18, 2010

Caster Semenya is a South African runner who won the gold medal in the 800 meters at the 2009 World Championships competition. Soon after her victory, others alledged that she may not be a "real" woman, and demanded investigation, despite the fact she was born and raised as a girl and has lived as a woman all of her life. Some media outlets have reported that Semenya had an intersex condition, although the result of the tests have not been officially disclosed.

We have received many emails from our friends about the mistreatment of South African runner Caster Semenya by the media and International Association of Athletics Federations (IAAF). We asked Sally Gross of the Intersex Society of South Africa for some advice as to how to best advocate for the intersex people of South Africa. Her reply is reproduced here with her permission.

[09/20/2009 Update] Support Initiative for People with atypical sex Develpment (SIPD) of Uganda also has an article about Caster Semenya case.

Posted by Emi on Sep 13, 2009

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.

Posted by Emi on Jul 27, 2008

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.

• Full Story...

Posted by Emi on Jul 4, 2008

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.

Posted by Emi on Jun 27, 2008

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."

Posted by Emi on Oct 28, 2007

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.

Posted by Emi on Jul 26, 2007

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.

Posted by Emi on Jun 5, 2007

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.

Posted by Emi on May 17, 2007