Both the diagnosis and medical treatment of gender dysphoria —particularly in children and adolescents—have been the subject of significant controversy in recent years. In this paper, we outline the means by which GD is diagnosed in children and adolescents, the currently available treatment options, and the bioethical issues these currently raise. In particular, we argue that the families and healthcare providers of children presenting with GD currently face two main ethical dilemmas in decision making regarding treatment: the pathway dilemma and (...) the consent dilemma. (shrink)

Wir diskutieren ethische Probleme der medizinischen Behandlung intersexueller Kinder. Gefragt wird nach dem Stellenwert von Elternwünschen nach eindeutiger Geschlechtszuweisung sowie nach den Konfliktfeldern, die zum einen zwischen konkurrierenden Wunschvorstellungen der Eltern und der behandelnden Ärzte, zum andern zwischen Kindeswohl und Kinderrechten entstehen können. Gegenwärtig wird Neugeborenen mit anatomisch uneindeutigem Genital trotz unsicherer Prognose über die Behandlungsergebnisse oft noch ein Geschlecht zugewiesen und operativ erstellt. Dieses Vorgehen ist von verschiedenen Seiten ethisch heftig kritisiert worden. Kipnis u. Diamond forderten 1998 im „Journal (...) of Clinical Ethics“ ein Moratorium für alle nicht vital indizierten geschlechtskorrigierenden Eingriffe. Diese Forderung orientiert sich am Interesse des zukünftigen Erwachsenen, betont dessen prospektive Autonomie und klammert den Elternwunsch aus. Dieses „Modell des antizipierten Konsenses“ kann jedoch mit Bezug auf Neugeborene und Kleinkinder bedeutsame Aspekte des Eltern-Kind-Verhältnisses nicht angemessen erfassen. Im Aufsatz werden Argumente angeführt, die es aus Sicht einer Ethik der Elternschaft rechtfertigen, ethische Entscheidungen auf der Basis eines beziehungsorientierten Modells zu treffen. In unserem Modell fallen Elternwünsche ethisch ins Gewicht. (shrink)

This article presents the Islamic bioethical deliberation on the issue of sex assignment surgery for infants with disorders of sex development or intersexed as a case study. The main objective of this study is to present a different approach in assessing a biomedical issue within the medium of the Maqasid al-Shari’ah. Within the framework of the maqasidic scheme of benefits and harms, any practice where benefits are substantial is considered permissible, while those promoting harms are prohibited. The concept of Maqasid (...) al-Shari’ah which is the mechanistic interpretation of Qur’an and Hadith presents the holistic attention of Islam on many life activities, including healthcare. Indeed, this concept encompasses many aspects of worldly life, both for the human individual and collectively for the whole society. In healthcare, the practice of SAS on DSD newborns has presented an assortment of implications on the future livelihood of the affected individual. The process of decision-making seems to be very multifaceted since every element such as the determination of the ‘correct’ sex and the urgency of early surgery must consider the benefits and harms, as well as the child’s rights and best interest. The application of the concept of Maqasid al-Shari’ah, would convey a pragmatic approach that is often disregarded in Western medicine. This approach considers the right of the individual to live life optimally, individually and socially and practice his faith, precisely, in accordance with the assigned gender. (shrink)

In a series of essays and letters published in 2010, commentators in bioethics debated the ethics of two interventions that aim to prevent or treat a symptom of a genetic condition called congenital adrenal hyperplasia, which can cause “virilization” in affected baby girls—the development of atypical, sometimes masculine‐appearing, genitals. Surgeries are often performed to try to “normalize” both the appearance and the function of affected girls’ genitals, and a drug thought to prevent virilization is sometimes prescribed to pregnant women who (...) are likeliest to be carrying an affected fetus. The CAH debates suggest that there is profound disagreement in the field about whether preventing or treating virilization is an appropriate goal of medicine—or, indeed, parenting. Of course, that disagreement has its roots in ongoing debates about how to understand and react to a range of anatomical and behavioral differences, from short stature to deafness to hyperactivity, as well as ongoing debates about the limits of autonomy—in this case, parental autonomy, which is all the more complex. These issues are at the heart of bioethics. Yet it can be very difficult for us to talk and write respectfully and clearly about them. Here, I recount the debates, show how they lost focus, and attempt to explain why the question about how parents and physicians should respond to atypical genitalia in children is so important and difficult. I argue that it is not a question that should be answered based on a single principle or philosophical commitment. No one principle can do all of the work. For each individual or family that faces it, the question is shaped by details about particular interventions aimed at altering a particular difference and offered in a particular social and family context. Scholars in bioethics who hold an especially strong commitment to any one principle should advocate for their views, but they must also make room for and respect the kind of pragmatic, particularized decision‐making that parents sometimes engage in. (shrink)

Ovarian tissue transplantation is an experimental procedure that can be used to treat both infertility and premature menopause. Working within the current legal framework in the USA, I examine whether ovarian tissue should be legally treated like gametes or organs in the case of ovarian tissue transplantation between two women. One option is to base classification upon its intended use: ovarian tissue used to treat infertility would be classified like gametes, and ovarian tissue used to treat premature menopause would be (...) classified like organs. In the end, however, I argue that this approach will not work because it engenders too many legal, cultural and logistical concerns and that, at least for the near future, we should treat ovarian tissue like gametes. (shrink)

Intersex—the fact of bodies neither typically male nor female, together with the grim history of its medical management—was a topic for feminist theory before there was such a thing as intersex activism. Indeed, critical academic scholarship about intersex supported the consciousness raising that made an intersex activist movement possible. Activist engagement, in turn, has expanded the understanding of the theorists whose work is responsive to that activism. Central to the thinking about intersex are the questions of identity and its limits (...) that are an important focus of the work of Gloria Anzaldúa, whose narrative suggests she had a condition associated with intersex. While her work largely predates intersex activism, it powerfully encapsulates the tensions displayed in contests over identity that have become central over the last 15 years, and furthermore offers insight into the challenges that lie ahead. (shrink)

Operations on intersexuals indicate that the sex of a person is based on more than biology. Expectations about proper gender activities furnish the frameworks through which certain features and combinations of features are understood to be fundamental to bodies and to comprise their sex. Yet, we can ask whether this interpretation is either coherent or consistent with our fuller conceptions of ourselves. Is there a point to interpreting a person as a sex?

Wir diskutieren ethische Probleme der medizinischen Behandlung intersexueller Kinder. Gefragt wird nach dem Stellenwert von Elternwünschen nach eindeutiger Geschlechtszuweisung sowie nach den Konfliktfeldern, die zum einen zwischen konkurrierenden Wunschvorstellungen der Eltern und der behandelnden Ärzte, zum andern zwischen Kindeswohl und Kinderrechten entstehen können. Gegenwärtig wird Neugeborenen mit anatomisch uneindeutigem Genital trotz unsicherer Prognose über die Behandlungsergebnisse oft noch ein Geschlecht zugewiesen und operativ erstellt. Dieses Vorgehen ist von verschiedenen Seiten ethisch heftig kritisiert worden. Kipnis u. Diamond forderten 1998 im „Journal (...) of Clinical Ethics“ ein Moratorium für alle nicht vital indizierten geschlechtskorrigierenden Eingriffe. Diese Forderung orientiert sich am Interesse des zukünftigen Erwachsenen, betont dessen prospektive Autonomie und klammert den Elternwunsch aus. Dieses „Modell des antizipierten Konsenses“ kann jedoch mit Bezug auf Neugeborene und Kleinkinder bedeutsame Aspekte des Eltern-Kind-Verhältnisses nicht angemessen erfassen. Im Aufsatz werden Argumente angeführt, die es aus Sicht einer Ethik der Elternschaft rechtfertigen, ethische Entscheidungen auf der Basis eines beziehungsorientierten Modells zu treffen. In unserem Modell fallen Elternwünsche ethisch ins Gewicht. (shrink)

It is difficult to develop good arguments when the central terms of the discussion are unclear – as with the current confused state of sex and gender terminology. Sports organisations and sports re...

This article explores the relationship between gender, technology, language, and how infants and children born with disorders of sexual development are shaped into intelligible members of the community. The contemporary medical model maintains that children ought to be both socially and surgically assigned and reared as one particular gender. Gender scholar Suzanne Kessler rejects this position and argues for the acceptance of greater genital variability through the use of language. Using a Heideggerian lens, the main question I seek to answer (...) in this article is: does Kessler’s approach succeed in its aim to better treat individuals born with disorders of sexual development? I argue that Kessler is successful in offering practical solutions for persons with intersexed conditions to exist and flourish as intelligible members of the community, but that her project ultimately relies on power to “challenge forth” greater acceptance of genital variance. Building on the work of Kessler and Heidegger, I argue that a better approach to making intelligible the existence of an infant born with a disorder of sexual development is not to rely on the manipulation of language, but to instead reinvigorate a sense of the sacred in response to having an intersex condition. (shrink)

This article discusses the ethics of the use of preimplantation genetic diagnosis to prevent the birth of children with intersex conditions/disorders of sex development , such as congenital adrenal hyperplasia and androgen insensitivity syndrome . While pediatric surgeries performed on children with ambiguous genitalia have been the topic of intense bioethical controversy, there has been almost no discussion to date of the ethics of the use of PGD to reduce the prevalence of these conditions. I suggest that PGD for those (...) conditions that involve serious medical risks for those born with them is morally permissible and that PGD for other “cosmetic” variations in sexual anatomy is more defensible than might first appear. However, importantly, the arguments that establish the latter claim have radical and disturbing implications for our attitude toward diversity more generally. (shrink)

The clinic is a loaded space for LGBTQI persons. Historically a site of pathology and culturally a site of stigma, the contemporary clinic for queer patient populations and their loved ones is an ethically fraught space. This paper, which introduces the featured articles of this special issue of the Journal of Bioethical Inquiry on “Bioethics, Sexuality, and Gender Identity,” begins by offering an analysis of scrutiny itself. How do we scrutinize? When is it apt for us to scrutinize? And what (...) are the benefits and perils of clinical and bioethical scrutiny? Bearing in mind these questions, the second half of this paper introduces the feature articles in this special issue in response to such forms of scrutiny. How, why, when, and in what ways to sensitively scrutinize LGBTQI persons in the clinic are the aims of this piece. (shrink)

The history of the field of intersex bodies/bodies with variations of sex development reflects the ongoing tension between sociomedical attempts to control uncertainty and reduce the duration of corporeal uncertainty by means of early diagnosis and treatment, and the embodied subjects who resist or challenge these attempts, which ultimately increase uncertainty. Based on various qualitative studies in the field of intersex, this article describes three temporal sociomedical approaches that have evolved over the last decade and aims to address the uncertainty (...) surrounding intersex/VSD bodies. These approaches are the corrective-concealing approach, which includes early surgeries and hormone therapies intended to “correct” intersex conditions and the deliberate concealment of the ambiguity and uncertainty associated with intersex conditions; the preventive approach, which involves early genetic diagnostic methods aimed at regulating or preventing the recurrence of hereditary conditions under the umbrella of VSD; and the wait-and-see approach, which perceives intersex bodies as natural variations and encourages parents to take time, wait, and give their children the right to bodily autonomy. A comparison of these approaches from biopolitical, phenomenological, and pragmatic perspectives reveals that time is an essential social agent in addressing and controlling uncertainty, a gatekeeper of social norms and social and physical orders, and, on the other hand, a sociopolitical agent that enables creative social change. (shrink)

Cheryl Chase has argued that “the problem” of intersex is one of “stigma and trauma, not gender,” as those focused on medical management would have it. Despite frequent references to shame in the critical literature, there has been surprisingly little analysis of shame, or of the disgust that provokes it. This paper investigates the function of disgust in the medical management of intersex and seeks to understand the consequences—material and moral—with respect to the shame it provokes.Conventional ethical approaches may not (...) provide quite the right tools to consider this affective dimension of the medical management of intersex, but we find in Nietzsche's Genealogy of Morality a framework that allows us a profound appreciation of its moral significance (Nietzsche 1887/1998). Understanding doctors' disgust—and the disgust that they promote in parents of those born with atypical anatomies—as a contemporary expression of ressentiment directs us to not focus on the bodies of those born with intersex conditions, which have been the privileged objects of attention both in medical practice and in criticisms of it, but moves us to consider instead the bodies of those whose responses constitute the motivating force for normalizing practices in the first place. (shrink)