If Biology Is Destiny, When Shouldn't It Be?
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>May 27, 2003
>By BARRON H. LERNER, M.D.
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>What would you do if your baby was born intersex, with sex organs and
>external genitalia not clearly male or female? How would you choose
>whether to bring up your child as a boy or a girl and decide whether
>doctors should perform corrective genital surgery?
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>A series of new studies and a book, "Intersex and Identity" (Rutgers
>University Press, 2003), seek to provide the answers to these
>questions. Yet despite this research, the ultimate choices may have
>less to do with a child's medical condition than with the hospital
>selected for childbirth. If this sounds like an anomaly in an era of
>evidence-based medicine, you are right.
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>It was only a dozen years ago that decisions about intersex children,
>who make up roughly 1 in 2,500 births, were made independently by
>physicians. So when infants were born with congenital adrenal
>hyperplasia, in which the female sex organs do not respond to hormones
>in utero, doctors shortened the enlarged clitorises and created
>vaginas. Surgeons converted boys born with extremely small penises,
>a condition known as micropenis, into girls, building
>clitorises and vaginas.
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>What led physicians to make such monumental decisions,
>often without consulting parents? The years after World War
>II represented a high watermark for Freudian psychiatry,
>with its emphasis on the significance of external
>genitalia. Physicians adopted this notion of anatomy as destiny, using
>surgery to create a clear gender identity.
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>Postwar surgeons readily removed ovarian or testicular
>tissue and refashioned external sex organs. As the saying went, "A
>chance to cut is a chance to cure."
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>The trouble was, it wasn't clear what was being cured. Or
>so said a group of intersex people who became activists in
>the 1990's. Some learned about their histories because of sexual or
>medical problems involving their genitals. Others obtained their
>medical records. What united them was anger that their variant
>genitalia had been treated like a disease and "corrected" secretly.
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>Foremost among these activists is Cheryl Chase, born in
>1957 with a micropenis. Although initially considered to be
>a boy, doctors eventually amputated her genitals and told
>her parents to raise her as a girl. She lived with
>deception and shame for years before going public.
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>Ms. Chase worked with other intersex people, academicians
>and doctors to found an advocacy organization, the Intersex Society of
>North America, in 1993. Like other health related advocacy groups that
>emerged after 1970, the society promoted full disclosure of medical
>information and informed consent. In the case of intersex, this
>strategy meant making parents active partners in decisions.
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>Dr. Alice D. Dreger, a historian of medicine who until recently was the
>chairwoman of the intersex society's board, says that surgeons had
>sought to convert complex psychosocial issues into simple anatomical
>problems that could be fixed. This strategy, she adds, is based on
>supposition, not research.
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>Given that such claims challenged long accepted dogma, it
>is not surprising that many surgeons and endocrinologists responded
>defensively. Some called the activists zealots.
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>Today, almost all doctors involved with intersex infants
>say they believe that parents must actively participate in decisions.
>But that is where agreement ends.
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>The intersex society has recently called for a moratorium
>on all nonlifesaving surgery on intersex children until
>they are old enough to participate in decisions. This
>policy stems in part from several recent studies, which
>found sexual and psychological problems among intersex
>adults who had surgery as infants.
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>In one study, published in The Lancet in April, Catherine
>L. Minto, a British researcher, surveyed 39 intersex adults who were
>reared as women. All 28 who were sexually active reported having sexual
>difficulties; 18 who had undergone clitoral surgery said they had often
>experienced inability to achieve orgasm. Sharon E. Preves, a
>sociologist at Hamline University in Minnesota, who interviewed 37
>intersex adults for "Intersex and Identity," agrees, adding
>that the surgery is "experienced as degrading and shaming."
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>"I have yet to read about, hear or meet an intersex person
>who is grateful for surgery done on them as an infant,"
>said Dr. Monica J. Casper, a sociologist who is executive director of
>the intersex society.
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>When certain physicians, like Philip Gruppuso, a pediatric
>endocrinologist at Brown, see an intersex infant, they now usually
>recommend against surgery. Lacking proof of its value, Dr. Gruppuso
>says, deferring surgery is easy.
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>Other doctors, however, object to such a blanket policy. It
>is one thing to advocate for patient autonomy, Dr. Kenneth
>I. Glassberg, a pediatric urologist at Columbia University, wrote in
>The Journal of Urology, but quite another to allow children with
>variant genitalia to "be considered freaks by their classmates."
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>While Dr. Glassberg acknowledges that some celebrated cases
>of corrective surgery have gone poorly, he adds that most patients -
>akin to a silent majority - are content with their outcomes. A
>hard-and-fast rule against early surgery, he says, "is itself
>experimental, and more of an experiment" than the operations.
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>One possible solution lies in collecting more data. A new
>task force, led by by a Medical University of South
>Carolina pediatric urologist, Dr. Ian A. Aaronson, is to
>issue formal guidelines.
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>Yet gathering such information and applying it to the lives
>of newborns will not be easy. For one thing, most of the survey data
>come from intersex people who belong to activist groups. While
>compelling, these interviews may represent a biased sample.
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>An intersex condition is not pneumonia, a medical problem amenable to
>antibiotics and outcome studies. Given the wide variety of intersex
>conditions and the intensely personal issues they raise, not even
>better data will provide parents with easy answers.
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>http://www.nytimes.com/2003/05/27/h...HA.html?ex=1055
>056371&ei=1&en=fd8640a941fcd45b
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__________________
Until you've lost your reputation, you never realize what a burden it was or what freedom really is. --Margaret Mitchell