ATTITUDES OF ADULT 46,XY INTERSEX PERSONS TO CLINICAL MANAGEMENT POLICIES H. F. L. MEYER-BAHLBURG, C. J. MIGEON, G. D. BERKOVITZ, J. P. GEARHART, C. DOLEZAL AND A. B. WISNIEWSKI From the New York State Psychiatric Institute and Department of Psychiatry, Columbia University (HFLM-B, CD), New York, New York, Divisions of Pediatric Endocrinology (CJM, ABW) and Pediatric Urology (JPG), Department of Pediatrics, Johns Hopkins University, Baltimore, Maryland, and Division of Pediatric Endocrinology, Department of Pediatrics, University of Miami, (GDB), Miami, Florida ABSTRACT Purpose: We surveyed a clinic sample of adult 46,XY intersex patients regarding attitudes to clinical management policies. Materials and Methods: All adult former patients of 1 pediatric endocrine clinic in the eastern United States whose addresses could be obtained and who consented to participation were surveyed by a comprehensive written followup questionnaire. Three questions on attitudes concerning the desirability of a third gender category and the age at which genital surgery should be done were presented in the context of ratings of satisfaction with gender, genital status and sexual functioning. Results: A total of 72 English speaking patients with 46,XY, including 32 men and 40 women 18 to 60 years old, completed the questionnaire. The majority of respondents stated that they were mainly satisfied with being the assigned gender, did not have a time in life when they felt unsure about gender, did not agree to a third gender policy, did not think that the genitals looked unusual (although the majority of men rated their penis as too small), were somewhat or mainly satisfied with sexual functioning, did not agree that corrective genital surgery should be post- poned to adulthood and stated that their genital surgeries should have been performed before adulthood, although there were some significant and important differences among subgroups. Conclusions: The majority of adult patients with intersexuality appeared to be satisfied with gender and genital status, and did not support major changes in the prevailing policy. However, a significant minority was dissatisfied and endorsed policy changes. KEY WORDS: sex differentiation disorders, sexuality, genitalia, hermaphroditism, gender identity In the last decade the clinical treatment of patients with intersexuality has become highly controversial. One of the major disputes concerns the assignment of gender to the intersex newborn. There are conflicting recommendations for which of the various intersex syndromes and for which de- gree of ambiguity of the external genitalia a gender assign- ment discrepant with the sexual karyotype and gonadal sta- tus should be recommended. 1–4 Moreover, given that some intersex adults see themselves as distinctly nonfemale/non- male and may have a hermaphroditic identity, 5 some authors advocate the consideration of a third gender or of even more gender categories. 6, 7 Australia has become the first industri- alized country known to have removed the legal barrier to such gender assignment by allowing an X, signifying unspec- ified sex or intersex, in the sex field of passports and the State of Victoria has issued a corresponding birth certificate that lists sex as “indeterminate—also known as intersex.” 8 A second major controversy focuses on early genital sur- gery for psychosocial reasons, for instance feminizing surgery of the external genitalia for gender confirmation or early vaginoplasty to facilitate later penovaginal intercourse, be- cause of the risks of substantial side effects of genital surgery on erotic sensitivity and orgasmic capacity. Therefore, the Intersex Society of North America, a patient support organi- zation in the United States, demanded in its 1995 Recom- mendations that any genital surgery not required for strictly medical reasons should be postponed until the intersex indi- vidual is old enough to provide informed consent. 9 In line with this request Diamond and Sigmundson called for a moratorium on early genital surgery until appropriate fol- lowup studies could generate sufficient data for an evidence based surgical policy. 4 Going further, some intersex activists advocate expanding the Federal Prohibition of Female Gen- ital Mutilation Act of 1996 to genital surgery for intersex children to block further early genital surgery for nonmedical indications. 10 The debate has led to reexamination of perti- nent aspects of the current management policy by a growing number of physicians who are involved in the clinical man- agement of intersex patients. 11–14 The Intersex Society of North America refutation of the prevalent optimal gender model of clinical intersex manage- ment 15 is based on various individual case histories of prob- lematic clinical management and/or poor outcome. While it has become clear from the ongoing debate that there are indeed intersex patients who are profoundly dissatisfied with major intersex related aspects of their quality of life, it is not certain whether such dissatisfaction is as widespread as the activist literature suggests, nor do we know how many inter- sex patients share publicized activist attitudes toward the most contentious issues. We documented pertinent data on a clinic sample of intersex adults. MATERIALS AND METHODS Patients. The attitude data presented were collected in the context of a followup study of 46,XY adults who had pre- sented to The Johns Hopkins pediatric endocrine clinic as infants or children with variable degrees of genital ambigu- ity. Details of the study procedures and medical and behav- Accepted for publication November 7, 2003. Supported by Grant 98-33C from the Genentech Foundation for Growth and Development, and National Institutes of Health, Na- tional Research Service Award F32HD08544 and National Center for Research Resources RR-0052. 0022-5347/04/1714-1615/0 Vol. 171, 1615–1619, April 2004 THE JOURNAL OF UROLOGY ® Printed in U.S.A. Copyright © 2004 by AMERICAN UROLOGICAL ASSOCIATION DOI: 10.1097/01.ju.0000117761.94734.b7 1615