The HBIGDA Standards of Care: Results of a Survey of Consumers (1994)
©1994, 2013 by Dallas Denny & Jan Heckler
Source: Denny, Dallas, & Heckler, J. (1994). The HBIGDA Standards of Care for Hormonal and Surgical Treatment of Persons with Gender Dysphoria: Results of a survey of consumers. Paper presented at the Eastern Regional meeting of the Society for the Scientific Study of Sex, Atlanta, GA, 7-10 April, 1994.
This was our initial presentation of our study on attitudes about the HBIGDA Standards of Care. See the link at the bottom of the page for the final report.
The HBIGDA Standards of Care
For Hormonal and Surgical Treatment of Persons with Gender Dysphoria
Results of a Survey of Consumers
By Dallas Denny
And J. Heckler
Abstract
Self-identified transsexual persons were queried via telephone, by mail, and at support group meetings and asked to complete a questionnaire about the Standards of Care.
We present preliminary findings on more than 300 completed questionnaires.
Sex reassignment is a complicated psychological, legal, social, and medical process which includes resocialization in the new gender, change of legal documents, and various medical treatments, including hormonal therapy and genital surgery, to masculinize or feminize the body. Sex reassignment is the only course of treatment which has been proven to be effective in the treatment of transsexualism, the most extreme form of gender dysphoria. The individual with transsexualism exhibits extreme ongoing dissatisfaction with his or her primary and secondary sex characteristics and social role (DSM 302.50).
Sex reassignment has become increasingly common in the four decades since the widely publicized report of Christine Jorgensen, in 1952. It has been estimated that more than 10,000 Americans have had genital sex reassignment surgery. When one considers another estimate, that fewer than one out of ten individuals who live as members of the non-natal sex obtain surgery, the true magnitude of the problem begins to be realized.
Sex reassignment is a time-consuming procedure which involves not only expensive and painful medical procedures, but adjustment to life in the new gender role. Because part of the process involves intrusive medical treatments which are elective in nature and which are irreversible, it is important that there be a system of checks and balances to prevent regrets.
Initially, there were no such checks and balances. In the mid 1970s, a group of concerned caregivers formed the Harry Benjamin International Gender Dysphoria Association, Inc. (HBIGDA). In 1979, HBIGDA published minimal Standards of Care for the hormonal and surgical treatment of sex reassignment. These Standards have been updated regularly, most recently in 1990. They describe minimal qualifications for treatment providers, address ethical issues, and place limitations on access to hormonal and surgical treatment by consumers by requiring ongoing psychological care. Genital surgery is available only at the end of the process, after a one-year period of mandatory living as a member of the desired sex. This period is called the real-life test.
The Standards of Care have been widely disseminated by HBIGDA, and have appeared in professional journals like The Annals of Plastic Surgery. Support groups and consumer advocacy agencies also distribute the Standards.
Because of the performance criteria placed on them by the Standards of Care, it is important that persons with gender dysphoria have access to them. The Standards are the “rules of the game.” By being informed, the consumer can safeguard his or her own best interests. And because it is commonly acknowledged that many professionals do not have knowledge of the Standards of Care, the consumer can ensure proper treatment by providing his or her caregivers with a copy.
To our knowledge, there are no data available regarding the extent to which the Standards are known to either consumers or caregivers, nor about the regard with which they are held. This is unfortunate, for recently The International Conference on Transgender Law and Employment Policy, Inc., a consumer-based organization, published Health Law Standards of Care which have none of the safeguards of the HBIGDA Standards.
Because of this lack of data, we decided to conduct a preliminary survey in order to determine 1) whether persons with gender dysphoria know about the HBIGDA Standards of Care; 2) if they have followed the Standards of Care; and 3) their opinions of the Standards of Care. We developed a questionnaire, and in May, we mailed copies to major gender advocacy and support groups throughout the United States, and to a variety of therapists who work with persons with gender dysphoria. Additionally, we included the questionnaire in a mailing of Chrysalis Quarterly, our magazine. We requested that the questionnaire be duplicated and distributed to persons with gender dysphoria.
To date, more than 300 completed questionnaires have been returned. We have entered them into Rapidfile, a computer database for MS-DOS computers.
We present a preliminary analysis of the data for approximately 300 questionnaires. The find the majority of respondents believe there should be Standards of Care and support the various safeguards (like the real-life test) of the HBIGDA Standards.
We plan to follow up this preliminary survey with a more detailed questionnaire and in-depth interview of persons with gender dysphoria in order to determine self-reported compliance with the HBIGDA Standards of Care and attitudes about both the HBIGDA and Health Law Standards of Care.
Results of a Questionnaire on the HBIGDA Standards of Care (Final Report)