s part of a larger project, a multidisciplinary group convened by The Hastings Center, Garrison, NY, met to consider medical, psychosocial, and ethical issues associated with the care of children born with atypical genitalia or later found to have other conditions now commonly grouped together as "intersex." These children may have congenital adrenal hyperplasia, gonadal dysgenesis, hypospadias, partial or complete androgen insensitivity syndrome, etc. This commentary reflects the deliberations of the group, which concluded that none of the appearance-altering surgeries need to be performed quickly; families with children with intersex conditions require multidisciplinary care; children with intersex conditions deserve to know the truth about their bodies; families and health care professionals will benefit from rigorous longitudinal studies; and health care professionals need additional training about intersex conditions and sexual health generally.
Following extensive examination of published and unpublished materials, we provide a history of the use of dexamethasone in pregnant women at risk of carrying a female fetus affected by congenital adrenal hyperplasia (CAH). This intervention has been aimed at preventing development of ambiguous genitalia, the urogenital sinus, tomboyism, and lesbianism. We map out ethical problems in this history, including: misleading promotion to physicians and CAH-affected families; de facto experimentation without the necessary protections of approved research; troubling parallels to the history of prenatal use of diethylstilbestrol (DES); and the use of medicine and public monies to attempt prevention of benign behavioral sex variations. Critical attention is directed at recent investigations by the U.S. Food and Drug Administration (FDA) and Office of Human Research Protections (OHRP); we argue that the weak and unsupported conclusions of these investigations indicate major gaps in the systems meant to protect subjects of high-risk medical research.
Section A: The nature, duration and purpose of study.Your child is invited to participate in a single follow-up visit between the age of six years, four months and seven years, two months of age (school age) for children who were enrolled in the SUPPORT MRI study. As you may recall, that study did an extra brain ultrasound at the time that your child's near-term brain MRI was done for routine care. The purpose was to compare the findings of early and near-term ultrasounds and near-term MRI to determine if one way of imaging gives more useful information than the other. The primary purpose of the study is to examine the children at school age and determine whether near-term MRI is better than ultrasound in predicting developmental outcome. The second purpose is to evaluate the weight, height, body measurements and blood pressure. During the clinic visit, the interviews for you as a parent will take about 1 ½ -2 hours and the time to evaluate your child will take about 3½ hours, including breaks. The interviews with you will be at the same time your child is being tested so the whole visit will last about 3½ hours.SUPPORT school age follow-up, funded by the National Institutes of Health, is being conducted at Women and Infants Hospital and 14 other medical centers across the country. About 500 children and their parents are expected to participate. Sixty-one children are eligible to participate at Women and Infants Hospital. Section B:The means by which it is conducted. The evaluation will include: For child:Weight and height will be measured using a standard scale, blood pressure will be obtained with the cuff method and the abdomen will be measured.A small measuring tool will be used to determine the thickness of the right arm, back and abdomen.A detailed neurological examination will be done to look at muscle strength, coordination, balance and ability to walk; a test of number skills and word identification will be conducted; a test of problem solving with words, blocks and pictures will be done; a test evaluating vision problem solving skills and ability to pay attention will be carried out. For parent:If your child cannot be evaluated by the last two tests, you will be asked to answer questions about the daily living activities of your child in the areas of self-care, mobility, communication, and understanding.In addition, you will be asked to complete questionnaires about your household and your child's overall health, education, and activities away from school.You will be asked questions about your child's medical history, including the recent vision and hearing tests.Section C. The possible benefit or lack of benefit to my child.All results of the tests will be shared with you and forwarded to you or your child's personal physician if requested. You will be reimbursed $25 for your time and your child will receive a small gift such as a book valued at ~ $5.00. Section D: The potential risks, and discomforts.There are no known risks to participating in the medical/neurological and developmental testing of ...
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In May 2006 the U.S. and European endocrinological societies published a consensus statement announcing a significant change in nomenclature. No longer would nineteenth-century variations on the term hermaphrodite, or the more newly introduced term intersex, be used in a medical context to describe “congenital conditions in which development of chromosomal, gonadal, or anatomical sex is atypical”; instead the preferred term henceforth would be disorders of sex development (DSDs). The announcement met with significant controversy, which I here examine in terms of the historical convergence of the treatment of homosexuality and intersex. The contemporary association of homosexuality with intersex risks obscuring genuine medical concerns unique to the treatment of intersex conditions and the consequences for affected individuals. At the same time, we must reckon with the ways that the complex and persistent identification of homosexuality with intersex has shaped the motivations both for the prevailing standard of care that has been so harmful and for the organized resistance to these practices in the intersex movement. Michel Foucault's understanding of the power of “normalization” can help us make sense of the history of medicalization and its pernicious effects, but in addition can allow those with intersex conditions and their allies to understand the positive possibilities that the change from intersex to DSDs can bring.
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