Management Of Intersex Conditions Research Articles

Making Sense of Intersex: Changing Ethical Perspectives in Biomedicine by Ellen K. Feder

Reviewed by: Making Sense of Intersex: Changing Ethical Perspectives in Biomedicine by Ellen K. Feder Erika Alm Ellen K. Feder, Making Sense of Intersex: Changing Ethical Perspectives in Biomedicine Bloomington: Indiana University Press, 2014, 261pp. ISBN 978-0-253-01228-9 Learning to love, in Nietzsche’s terms, is the enactment of a corporeal generosity; it entails changes in the one who ‘must learn’ to love. Distinguishing what, following Gail Weiss, we might term an ‘embodied ethics’ (1999, 158) from an ethics of ressentiment is the embodied transformation of the one who loves. Rather than seeking changes in the bodies of children with atypically sexed anatomies, the imperative for change is located in the bodies of parents, in physicians, in the rest of us. (87) In Making Sense of Intersex: Changing Ethical Perspectives in Biomedicine, Ellen K. Feder asks what philosophy can add to the understanding of the harmful practices of intersex management. With a strong conviction that narratives of those most acutely affected need to be in focus, Feder has conducted interviews with adult intersex people, parents of intersex children, and physicians. Situating her study in the recent changes in the standards of care, published as “Consensus Statement on Management of Intersex Conditions” (2006), following a conference with U.S. and European endocrinological societies in 2005, Feder sets out to understand why normalizing surgeries are still being [End Page 161] performed, and justified as ethically sound, given that intersex activists and allies have testified for decades to the psychological and physical harm caused by normalizing surgeries. Feder opens up with a genealogical inquiry into the scientific and clinical contexts of intersex management. It is a U.S.-centered history, but Feder points to aspects not recognized in contemporary discussions, like the convergence of Western, colonial understandings of genital modification in African tribes and the modernist project of medicalization as the solution to the perceived problem of nature being more diverse than culture bargained for (128). One of the main points in Making Sense of Intersex is the unpacking of the notion that it is the parents of intersex children that push for normalizing surgery, that parental anxiety is at the root of the status quo. Consequently, Feder argues that the widely held assumptions about parental unconditional love is one of the fundamental problems with the dominating bioethical approach towards intersex management. To challenge this approach, she turns to Eva Kittay’s work on the vulnerability of so-called dependency workers, and the derivative dependency that they experience through their reliance on expert knowledge, i.e., the medical providers. The regulatory ideal for dependent workers is the “transparent self ” (53), which presupposes a complete identification with the caretaker on the dependency worker’s part. Feder explores how this ideal of identification might be complicated by the birth of a child other than the one expected. She asks if the focus on genital appearance and the question of future sexual sensitivity and function—so central in the clinical discussions about the pros and cons of normalizing surgeries—may hinder the expected identification. Through the narratives of adult intersex activists, she also explores the potential harm done by all aspects of intersex management—surgical interventions as well as discourses of shame, secrecy, and pathologization—through putting Lacan’s understanding of the mirror stage in conversation with Merleau-Ponty’s insights into the constitution of body schemata, and ends up arguing for an embodied ethics of corporeal generosity that is based in human vulnerability and relationality. The stakes in her critical intervention become apparent when Feder engages in direct dialogue with feminist theorists and ethicists; for example, in her discussions about how envy might be an instigating affect in intersex management. Building on Freud’s theory of the infant’s polymorphic desire, and Judith Butler’s and Jane Flax’s readings of the melancholic identification that is an effect of the unmournable loss of this desire, she argues that the disgust physicians express is rooted in envy. Using Nietzsche’s concept of ressentiment as a prism, Feder wants us to focus “not on the bodies of those born with intersex conditions, which have been the privileged objects of attention both in medical...

A Review of the Management of Intersex

The birth of an individual with a blend of both male and female internal or external genitalia is known as an intersex condition. The incidence of genital anomalies is estimated to occur in 1 in 4,500 live births. Each intersex condition is determined by the external genital appearance, internal genital structures, and fertility potential. The main concept involved in the management of intersex is the establishment of an experienced multidisciplinary team. Management of intersex conditions is complex and involves a person's gender identity, gender role behavior, sexual orientation, sexual functioning, and psychological adjustment. This review will outline the management of intersex in the light of the latest research. We focus on diagnosis, surgical techniques, and the psychological aspects that are encountered in the management of intersex.

Human Intersexuality: Difference or Disorder?

In January 2008, I had been invited to the University of Hamburg to speak on the management of intersex conditions as I saw the current situation. While there, I was unexpectedly given an award by the German Intersex Society (Intersexuelle Menschen e.V.). As part of the award presentation, the group specifically complimented me for disputing the renaming of intersex with the acronym DSD with its meaning of Disorders of Sex Development. This intersex support group praised first encouraging the use of VSD for Variations of Sex Development (Tamar-Mattis & Diamond, 2007) and then DSD with the meaning of Differences of Sex Development (Diamond & Beh, 2008). The latter two acronyms removed the stigma accompanying the use of the word Disorder as part of an identifying characteristic while the latter transformation of DSD maintained the original convenience of the DSD abbreviation. DSD meaning Disorder, while developed by a consortium of clinicians and others (Hughes, Houk, Ahmed, Lee, & LWPES/ESPE Consensus Group, 2006), was not derived at by any official organization but by a self-selected group. The terminology and meaning given to DSD has been strongly spoken against by the largest international organization of intersexed persons as being demeaning and insulting (http:// www.intersexualite.org/Response_to_Intersex_Initiative. html). For those that argue that the use of Disorder as a description of the conditions referred to is a benefit to those that can gain from having a ‘‘medical condition’’ covered by insurance there are other instances where conditions exist that do not have to be labeled as a disorder to benefit from insurance coverage and they occur without being stigmatic and demeaning. The prime example is pregnancy. Personally, I have not encountered any parent or adult that was pleased with being informed they or their child had a disorder. I have met many that accept that there are differences. The designation DSD can certainly be maintained but with the meaning of Differences of Sex Development. Doing so would not be a loss to the original intent of removing previous stigmas using terms such as hermaphrodite or pseudohermaphrodite but would be an enhancement and improvement to the original intent. It would be an improvement in the treatment of those with intersex conditions.

Current views on evaluation, management, and gender assignment of the intersex infant

In recent years, traditional views regarding the management of infants with intersex conditions have been challenged. Some of these patients have gender dysphoria and gender conversion, although most adults with intersex consider themselves to be either male or female. Hormonal and genetic factors may have a more important role in gender identity and sexual satisfaction than previously recognized, whereas the importance of phallus size to male gender identity and sexual satisfaction may have been overestimated. The impact of androgen imprinting on the developing brain is uncertain, but it is likely to be significant. The issue of genital surgery in infancy is controversial, although many adult patients concur that infancy is the best time for such procedures. Several reports indicate that the functional outcomes of genital surgery are poor, although more recently developed surgical techniques may achieve better results. Good communication between physicians, patients, and families regarding intersex conditions is paramount. We review current understanding of the evaluation and management of intersex conditions.

Minimal Surgical Intervention in the Management of Intersex Conditions

The surgical correction of ambiguous genitalia has been a significant part of treatment for intersex conditions for the last 50 years, based on the belief that the child will be psychologically damaged by the uncorrected appearance. Despite widespread adoption of this policy, there is no evidence in the literature to support this approach. More commonly, the primary indication appears to be for the relief of parental anxiety. However, patients are increasingly expressing dissatisfaction with previous management, arguing that surgery should only be performed for strictly defined medical indications. Surgery may comprise treatment for the absent or shortened vagina, or for the correction of virilised external genitalia. The timing of such surgery is controversial, with many surgeons believing that a 'one-stage' procedure in infancy is appropriate. However, given that the vast majority of patients require further surgery at adolescence, others argue that deferral of vaginal surgery until after puberty is more appropriate. The role of clitoral surgery is contentious with many questioning the necessity of any operation in childhood for cosmesis which may impair subsequent sexual function. Despite claims that newer surgical techniques lead to a better result than previously, there remains little information in the literature regarding long-term functional outcomes following clitoral reduction procedures. Alternatives to vaginal and clitoral surgery are considered in this article. Vaginal operations should almost always take place at adolescence, given the poor outcomes of early surgery. When clitoral operations are performed, this should be for severely virilised individuals, with surgery best avoided for those with only mild or moderate virilisation.

Presence of bilateral fallopian tubes with measurable müllerian-inhibiting substance in a true hermaphrodite

A case of true hermaphroditism is presented in which the serum müllerian-inhibiting substance (MIS) level was discordant with the phenotype predicted according to the Jost principle. The implication of this finding with respect to both the pathophysiology of true hermaphroditism and the role of MIS in the management of intersex conditions is discussed.