Book Review

Ethics and Intersex

N Engl J Med 2007; 356:2434-2435June 7, 2007

Article

Ethics and Intersex
(International Library of Ethics, Law, and the New Medicine. Vol. 29.) Edited by Sharon E. Sytsma. 336 pp. Dordrecht, the Netherlands, Springer, 2006. $149. ISBN: 978-1-4020-4313-0

This book is a bold attempt to address the vexed question of ethics and intersex. Sharon Sytsma has brought together 20 contributions from a range of professionals. Many of the chapters are written in essay form. Overall, it is difficult to justify rating this book as the main reference to consult on ethical issues related to management of intersex conditions. Nevertheless, several sections illustrate the complexity of the subject.

A certain amount of historical discontent with the way medical professionals have managed intersex conditions pervades the book. It is punctuated by language that reflects this discontent, apparent in the phrase “the concealment model of intersex treatment” and the statement that “intersex is a hotbed of deception.” Furthermore, “Sex, Lies, and Pediatricians” is a subheading in one chapter. Indeed, in the same chapter, the current management of intersex conditions is compared with the Tuskegee Syphilis Study (conducted from 1932 to 1972), which examined the natural history of syphilis in blacks but continued even after penicillin became available.

A major debate about the management of intersex conditions has centered on how much information should be disclosed to the family and, in particular, to the affected child as he or she grows up. The medical profession has been perceived as taking an approach to making decisions that is too cavalier. Julie Greenberg, in her chapter “International Legal Developments Protecting the Autonomy Rights of Sexual Minorities,” discusses three possible approaches. The first option is the use of a dominant protocol in which surgery to sculpt the genitalia is performed early in infancy; information is withheld from the parents to avoid traumatic disclosures. In the second option, a middle-ground approach, the physician provides full disclosure to the parents but allows them to decide what is in the best interest of the child. In the third option, a complete moratorium on treatment that is not medically necessary is in place until the child is of sufficient cognitive and developmental maturity to receive full disclosure and make his or her own decision about surgical treatment. This kind of debate finds its way regularly into the popular press — one example is the choice for the title of an article published last year in the New York Times Magazine — “What If It's (Sort of) a Boy and (Sort of) a Girl?”

Some chapters include useful facts and are essential reading for professionals involved in the intricacies of managing intersex conditions. Terminology and definitions are discussed thoroughly so that the nuances of the terms “gender assignment,” “gender identity,” “gender expression,” and “gender diversity” can be fully understood. Knowledge and understanding of these terms are mandatory for anyone who has responsibility in the team treatment of a child with an intersex condition.

Greenberg discusses informed consent and international differences in the legal issues surrounding consent. She concludes by proposing that committees of experts drawn from the relevant disciplines should be charged with the responsibility of providing guidance to families of children with intersex conditions, ensuring that any consent proffered by parents is qualified and persistent, accumulating outcome data on various treatments, and providing continuing education to persons with intersex conditions, their families, and their physicians. This is indeed an ambitious goal, and the principles have considerable merit, but they would need to be applied in the local context of legal, ethical, and cultural frameworks, with consideration of the resources available to multidisciplinary teams working in this field of medicine.

A number of chapters cover more specific topics. Examples include discussions of how management decisions in the past might have been different if institutional review boards had been in place, the effects of prenatal sex imprinting and how medical decisions are made with respect to male neonates with micropenises, the different approaches to the management of intersex conditions in Eastern and Western cultures, and adult outcomes of feminizing surgery (data that have fueled the debate about the advisability of early surgery). Also included is a pragmatic discussion of the role of the specialized clinical psychologist in the multidisciplinary team. In another chapter, Sytsma specifically addresses the prenatal treatment of congenital adrenal hyperplasia with dexamethasone and the safety and nonmaleficence issues it raises (Primum non Nocere). Patricia Beattie Jung's discussion of intersexuality from a Christian perspective provides a point of view that would not have been included in a standard medical text. Jung concludes by proclaiming that “God is not male, female, or intersexed, but rather truly beyond human sexual differentiation.”

Several chapters in this book are a positive contribution to knowledge of the complexity of managing intersex conditions. To that end, it is a useful resource even though the universal audience specified in the preface is probably overly ambitious. It should be clarified, however, that the field has changed since some of the criticisms mentioned in the book were leveled at medical professionals. The term “intersex” has not been used as widely among medical professionals since the publication of a consensus document compiled by a faculty of specialists in the field, myself included (Arch Dis Child 2006;91:554-63). In that document, we proposed replacing “intersex” with “disorders of sex development,” a term we defined and used as a basis for further changes in nomenclature and a simpler classification of the causes of the disorders. The consensus document is a step in the right direction, but it lacks the kind of discussion of ethical issues that this book provides.

Ieuan Hughes, M.D.
University of Cambridge, Cambridge CB2 2QQ, United Kingdom
iah1000@cam.ac.uk