Unnecessary Surgeries on Intersex Children in the US

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Unnecessary Surgeries on Intersex Children in the US “I Want to Be Like Nature Made Me” Medically Unnecessary Surgeries on Intersex Children in the US HUMAN RIGHTS WATCH “I Want to Be Like Nature Made Me” Medically Unnecessary Surgeries on Intersex Children in the US Copyright © 2017 Human Rights Watch All rights reserved. Printed in the United States of America ISBN: 978-1-6231-35027 Cover design by Rafael Jimenez Human Rights Watch defends the rights of people worldwide. We scrupulously investigate abuses, expose the facts widely, and pressure those with power to respect rights and secure justice. Human Rights Watch is an independent, international organization that works as part of a vibrant movement to uphold human dignity and advance the cause of human rights for all. Human Rights Watch is an international organization with staff in more than 40 countries, and offices in Amsterdam, Beirut, Berlin, Brussels, Chicago, Geneva, Goma, Johannesburg, London, Los Angeles, Moscow, Nairobi, New York, Paris, San Francisco, Sydney, Tokyo, Toronto, Tunis, Washington DC, and Zurich. For more information, please visit our website: http://www.hrw.org JULY 2017 ISBN: 978-1-6231-35027 “I Want to Be Like Nature Made Me” Medically Unnecessary Surgeries on Intersex Children in the US Methodology ....................................................................................................................... 1 Summary ........................................................................................................................... 5 Glossary ............................................................................................................................ 15 A note on terminology ............................................................................................................. 15 I. Background ................................................................................................................... 20 A History of Intersex Activism and Evolution of Medical Protocol.............................................. 25 Non-disclosure of Intersex Status ........................................................................................... 33 Changing Medical Protocols .................................................................................................... 41 The Persistence of Medically Unnecessary Surgery .................................................................. 47 II. Autonomy and Integrity ................................................................................................ 53 A Harmful Paradigm ................................................................................................................ 53 Irreversible Medical Interventions ........................................................................................... 61 Repetitive, Abusive, and Unnecessary Genital Exams .............................................................. 64 Violations of Privacy and Messages of Shame ......................................................................... 67 III. Pressure from Doctors: Case Studies ........................................................................... 72 Operating Before Diagnosis: The Story of Judy, Carl, and Jackey ............................................... 72 Wendy’s Struggle Against Surgery Pressures ........................................................................... 74 The Impact of Openness: From “It” to an Option for Reversible Care ........................................ 76 IV. Limited Data on Outcomes ........................................................................................... 82 V. Lack of Informed Consent ............................................................................................. 87 VI. Justifications for Surgery ............................................................................................. 93 Care Principles for Transgender Children .............................................................................. 106 Advice Without Data ............................................................................................................. 107 When Parents Push for Surgery .............................................................................................. 113 VII. The Positive Role of Peer Support Groups .................................................................. 125 VIII. Legal Standards Regarding Intersex Children ........................................................... 131 International Human Rights Law ........................................................................................... 132 US Domestic Law .................................................................................................................. 144 Recommendations ........................................................................................................... 153 To the United States Congress .............................................................................................. 153 To State Insurance Boards and Departments of Financial Services ......................................... 153 To Private Insurance Companies ........................................................................................... 153 To State Legislatures ............................................................................................................ 154 To the US Department of Health and Human Services ............................................................ 154 To the National Institutes of Health ....................................................................................... 154 To the American Medical Association .................................................................................... 154 To the American Psychological Association ............................................................................155 To the Attorneys General of all 50 states ................................................................................155 To the American Academy of Pediatrics ..................................................................................155 To the World Health Organization: ........................................................................................ 156 To UNICEF: ............................................................................................................................ 156 To the Society for Pediatric Urology, the Pediatric Endocrine Society, and the North American Society for Pediatric and Adolescent Gynecology: ..................................................................157 To the World Professional Association for Transgender Health: ...............................................157 Acknowledgments ........................................................................................................... 158 Appendix I .......................................................................................................................160 Appendix II ......................................................................................................................162 Appendix III ..................................................................................................................... 165 Appendix IV .................................................................................................................... 168 Appendix V ...................................................................................................................... 171 Appendix VI ..................................................................................................................... 173 Appendix VII .................................................................................................................... 174 Methodology Reader Advisory: This report contains graphic descriptions of traumatic experiences, often affecting children. This report is the result of a partnership between interACT and Human Rights Watch. A Human Rights Watch researcher and a research consultant who is a practicing physician in California conducted the interviews cited in the report. The report is based on in-depth interviews with 30 intersex adults, 2 intersex children, 17 parents of intersex children, and 21 healthcare practitioners including gynecologists, endocrinologists, urologists, psychologists, and other mental health providers who work with intersex people. Human Rights Watch also interviewed eight people who reached out to us following a campaign run by a support group for people with Congenital Adrenal Hyperplasia (CAH) and parents of children with CAH. This group included six parents of children with CAH, and three individuals with CAH. These interviewees all expressed a desire to not be labeled, or to have their children categorized, as intersex. We include the data collected from those interviews in this report. As the discussion on terminology in the glossary of this report explains, we use “intersex” as an umbrella term that can sometimes include individuals with CAH. In all instances where interviewees expressed a desire to not be associated with the term intersex, we note the testimony accordingly. Founded in 2006, interACT is an organization in the United States focused on advocating for the human rights of children born with intersex traits. They do this by raising intersex visibility, empowering young intersex advocates, and promoting laws and policies that protect intersex children and youth. All interviews were conducted in English. Most interviews were conducted in person, with some additional
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