Intersex Children Research Articles

Intersex, infertility and the future: early diagnoses and the imagined life course.

Infertility is often recognised as a status that is medically identified in adulthood after unsuccessful attempts to conceive. This paper develops existing literature by illustrating how current conceptualisations of infertility do not incorporate a full range of experiences. Drawing on detailed, reflective diaries and in-depth interviews with five participants, I explore how infertility is experienced and understood by women with variations of sex characteristics (VSCs) or intersex traits. I argue that greater consideration needs to be applied to intersex people and the circumstances of an infertility status that may be received in infancy, childhood or adolescence, before or outside of attempts to conceive, and without undergoing fertility treatment. Through discussions of time and futurity, this paper seeks to explore how visions of the future coalesce with an infertile status that is received in combination with an atypical sex status early in life. The paper indicates that early infertility can hinder some intersex children and young people's ambitions. However, infertility is not understood to be pathological or consistently prohibitive throughout the lives of everyone affected. Intersex women's conceptions of a potentially childless future are varied, complex, ambivalent and, in some cases, transitional throughout the life course.

Re Carla: An Error in Judgment

As Justice Brennan succinctly explained in Department of Health and Community Services v JWB & SMB (Marion’s Case),[1] every person has a unique character and dignity that warrants respect and protection under the law. This extends to every member of society, whatever their race, gender, sexual orientation, sex characteristics or religion. If dignity is to be respected then the affected person should be at the centre of any enquiry, their preferences heard and their interests protected. Sadly however this ideal does not always translate into practice and a recent decision regarding surgical interventions on intersex children is an example of a situation in which the affected person’s rights and future interests were not afforded clear priority. The decision of Re: Carla (Medical Procedure) [2016] FamCA 7 (‘Re: Carla’) saw the Court handing full authority for decision-making to the parents and the medical fraternity. This withdrawal of the need for external scrutiny of an invasive and potentially non-therapeutic medical procedure signalled a retreat by the judiciary from any meaningful engagement with the child’s future preferences. In this article, we argue that this decision, whilst well intentioned is, quite simply, an error in judgment.
 
 [1] Ibid.

Histories of the Transgender Child by Julian Gill-Peterson

Reviewed by: Histories of the Transgender Child by Julian Gill-Peterson Gabrielle Owen (bio) Julian Gill-Peterson. Histories of the Transgender Child. Minnesota UP, 2018. This book begins by dismantling a commonly held assumption—rehearsed in popular media and academic scholarship alike—that transgender children are new. Conversations surrounding trans children so often take the form of invalidation, as if it is up for debate whether or not they are allowed to exist. Histories of the Transgender Child shows how transgender children have existed for (at least) a century, drawing from a rich archive of medical documents that show "multiple trans childhoods, with multiple definitions of transness (including nonmedical forms of knowledge and identity), each with competing definitions that exceed the binary terms to which transness in general and trans childhoods have been confined in the postwar medical model" (63–64). Some, like Val, socially transitioned as children with parental support as early as the 1930s without any "substantive relation to medicine," suggesting "just how many more trans people" there might be throughout history who "had no reason at all to be archived" (62). Gill-Peterson's exploration of the medical archive, on the other hand, reveals a devastating record of the instrumentalization of trans and intersex children at the hands of doctors who ignored children's self-knowledge and desires. For this reason, they explain, "[t]his book's uncovering of a century of untold stories is . . . not a recuperative or reparative project" (4). They write, "[t]he truth is, we don't know trans children because we have inherited, reinforced, and perpetuated a cultural system of gender and childhood in which they are unknowable and, what's worst of all, unable to be cared for except through forms of harm" (ix). The histories uncovered in this book conclude with a call to action for "an ethical aperture of relation," one that does not come from the corrective impulses of medicine but rather one that begins with a desire that trans children exist, grow, and flourish in the first place (203). Highly specialized scientific terminology can make reading a challenge at times, particularly in the introduction and chapter 1, though well worth the effort. One such term is phenotype, which Gill-Peterson uses often, referring to the observable, bodily characteristics of sex and gender. The precision of the term phenotype is important to their analysis in that it indicates that these outward, observable characteristics are believed to be the expression of genotype, that is, determined by genetic code. The phrase "sex as phenotype" refers to a very specific historical conceptualization: "as phenotypes that pretend to derive themselves straightforwardly from an imagined genotype, [End Page 133] [sex and gender] are metaphors that go too far in relation to biological life, overdetermining it with poorly fitted meaning" (38). If sex was phenotypic but at the same time alterable through medical technologies, eugenic doctors and scientists imagined that "sex granted access to the real manipulation of form and the transmission of that form's heredity to future generations" (42). Thus, this conception of sex as phenotype is fundamentally eugenic in nature, linking sex to race. Another concept in the book that bears some explanation is racial plasticity, which is central to the arguments of earlier chapters but receives the most clarifying treatment through the archival examples in chapters 2 and 3. Gill-Peterson shows how plasticity was raced white within a developmental model of childhood growth, symbolizing the biological potential of white children to achieve an evolved, ideal human form in contrast to children of color, whose bodies were imagined as atavistic and resistant to change. This symbolic investment had real consequences in practice, in which doctors "regarded black children as suitable experimental subjects because of presumed access and disposability, whereas white children were framed as exhibiting the potential for a normative cure or at least improved normality" (79). Likewise, trans white children and adolescents in the 1960s were offered "curative" medical support while black trans children were frequently misdiagnosed as either homosexual or schizophrenic and then institutionalized or imprisoned. To be clear, these differences describe two different degrees and types of harm carried out as eugenic fantasy: black children and children...

Special Parents for "Special" Children? The Narratives of Health Care Providers and Parents of Intersex Children.

Decisions on the clinical management of children with an intersex condition heavily depend on the kind of information parents receive from healthcare professionals. This paper aims to explore this influence by analyzing the stories of parents and care providers. The presented data come from 19 semi-structured interviews with parents of intersex children and healthcare professionals specializing in intersex conditions in Switzerland and Germany. Arthur Frank's narrative framework was used to analyze the stories and sort out which kind of cultural threads were available to participants to make sense of their experience. Although many healthcare providers discouraged early genitoplasty, they believed that the decision not to operate required unique parenting skills, which few parents possess. This vision was shared by the parents in our sample. Some parents also projected this specialness upon their children, viewing the condition as a special gift, and as a possibility of personal growth.

Management of intersex newborns: Legal and ethical developments.

Countries worldwide are increasingly expanding male/female binary sex classifications to recognize a third status. Intersex newborns may be included in this third category on birth certification. Parents, families, and communities require counselling and education to accommodate intersex newborns without stigma or discrimination. Whatever its biological or genetic origin, intersex status is a natural if relatively uncommon condition (one in 1500-2000 live births) that distinguishes sex from gender. The tendency of societies to recognize only male and female genders at birth has resulted in intersex children being subjected to invasive surgery and related, sometimes lifelong, medication to confirm them as male or female. On gaining maturity, some are severely distressed and resentful that early gender assignment was mistaken, particularly when excision of testes to enforce femininity or of ovaries to enforce masculinity has denied them procreative capacity. Emerging principles support postponement of such interventions until intersex individuals can make a gender choice for themselves.

Intersex in the Age of Queer Bioethics

Queer Bioethics and the inventory of its potential populations include a wide range of queer subjects: lesbian parents, HIV-positive gay and bisexuals, transgender youth, and non-cisgendered individuals, to name a few. With the ethical dilemmas and ethical duties couched inside of a Queer Bioethics in mind, this article will consider one of the field’s most enduring citizens: the intersex child. More specifically, the figure of the intersex child with ovotesticular non-normativity will be scrutinized on ethical and clinical planes – a major aspect of queer bioethics is, after all, clinical ethics for queer populations. Ovotesticular conditions will be covered at length; we discuss different variations in addition to narrowing the topic to those with 46,XX and ambiguous genitalia, specifically those 75% diagnosed under the age of 20, and speak on issues related to this population. We will also briefly discuss the population of the 20% diagnosed under the age of 5 years old. Interventions will be discussed in all realms of intersex conditions – specifically ovotestes. We will conclude with a principalist approach to ethical topics such as autonomy, beneficence, and non-maleficence, weighing these principles equally and ultimately erring on the side of autonomy within pediatric ethics where possible.

Time matters for intersex bodies: Between socio-medical time and somatic time

This article focuses on the dynamic relationships between time and intersex bodies that exist, on the one hand, in medical policy on intersex bodies and, on the other, in intersex people's subjective experiences. Time, from a sociological perspective, is a biosocial agent that establishes diagnostic practices, regulations, and treatment policy regarding intersex bodies. The systematic construction of timeframes by biomedical professionals aims to rapidly diagnose and treat intersex patients and is deeply rooted in the “dimorphic soma-gender order” (DMSGO), the imagined unified relationship of female bodies to femininity and male bodies to masculinity. From a socio-phenomenological perspective, I describe the concept of somatic time, which involves the relationship between time and the soma, the body's own particular clock and rhythms, according to which it grows, changes, and develops, and the body as a time capsule that stores experiences. I will illustrate the somatic time of intersex people and their subjective embodied experiences of the soma-gender relationship, and explore how their somatic time challenges biomedical timeframes. This qualitative study is based on narrative interviews with biomedical professionals, parents of intersex children, and intersex adults from Israel and Germany.

Gender and Cortisone: Clinical Practice and Transatlantic Exchange in the Medical Management of Intersex in the 1950s.

This article complicates the history of the standardization of intersex case management developed at the Johns Hopkins Hospital in the 1950s by focusing on clinical practices and logics and the transatlantic circulation of knowledge. Using patient records and published studies, I follow the exchanges between pediatric endocrinologists Lawson Wilkins (Pediatric Endocrinology Clinic, Baltimore) and Andrea Prader (University Children's Hospital, Zürich) on cortisone treatment for children with congenital adrenal hyperplasia (CAH), on psychosexuality and gender role, on choosing and changing the sex of intersex children, and on genital surgery. I argue that a focus on the transatlantic exchanges between these two clinics illuminates a more complex genealogy of modern intersex case management. It also provides insight into how physicians understood their clinical practice and sheds light on the messiness and pragmatic contingencies of what only in retrospect appears to have been a consistent treatment regime.

Care and Treatment of Intersex Children

Care and Treatment of Intersex Children

О юридическом признании изменения пола

The sex of a person is assigned at birth. Later some people — intersex persons and transsexuals — experience the problems with a legal gender and seek to change the entry of birth, certificate of birth and other documents. This article has been written under the impulse from case S. (post surgery transsexual) which has been considered by Russian courts. Neither the registrar’s office nor courts allowed S. to make change in his entry of birth. As result he faces total discrimination on the grounds of gender identity. As it is known, applications of two transsexuals — No. 86501/12 (Y. P. v. Russia) and the Application No. 60796/16 (X. v. Russia) — were communicated to the Russian Government by the ECHR on 23 February 2017. This article explains the meaning of legal gender, reasons of its change, the procedure of amending the entry of birth in such case in Russia and shows that the registrar’s office and courts put forward unfounded arbitrary conditions due to gaps in legislation and ignore the right of a person to the legal recognition of his or her gender identity. International legal approaches to the realization of this right are highlighted with emphasis on the ECHR positions. The examples of contemporary foreign legislation on the gender recognition including the attitude to forced divorce and new approach to the entry of birth in case of birth of intersex child to prevent premature medical intervention contrary to the gender self-identification of such a child are given.

Intersex children: Who are we really treating?

Surgery to align an infant child’s genitals to a medically assigned sex is controversial because it is irreversible and therefore may potentially be detrimental to the child as they develop into a gender identity. I argue that the significant issue for genital-normalizing surgery is decision-making and that English law does not promote or protect the best interests of the intersex child or the inherent human rights that are protected by both domestic and international law. Using a doctrinal and socio-legal methodology along with a close analysis of bioethical arguments, I argue that the interpretation of the best interests of infant intersex children is manipulated to support the lack of social, legal and medical acceptance of intersex as an ‘abnormality’ that must be corrected, in order to conform to the accepted normality of binary male and female sex. In acknowledgment of this legal and professional standards deficit, I will propose a shared-decision-making approach to support the welfare of the child, which, at its core, places the child as the primary decision maker.

Intersex Genital Mutilation – A Western Version of fgm

Children around the world are subjected to genital mutilation, which constitutes a serious breach of the rights of the child. When procedures are carried out on girl children in countries such as Africa, the Middle East and the Philippines, the practice is called Female Genital Mutilation or fgm. Although the term fgm involves a vast range of rituals from extremely invasive to quite minor, it is universally decried as an abhorrent social practice for which there should be zero tolerance. Yet intersex children in the West are subjected to equivalent treatment, and their plight has been ignored or endorsed. In the last few years, the practice has begun to be seen as a form of cruel and unusual treatment, possibly constituting torture. Now referred to as Intersex Genital Mutilation or igm, it is argued that this is a cultural practice equivalent to fgm and that advocates of children’s rights should work to prevent the abuse of intersex children.

When Parents Choose Gender: Intersex, Children, and the Law.

In England and Wales, it is usually lawful for those with parental responsibility to consent to treatment on children who have not acquired legal capacity, providing that they are acting in the child's best interests. Whilst in most instances this process is unproblematic and the decisions made are non-controversial, there are troubling examples where this is more problematic. The difficulties for a family with a child who has an intersex condition will be considered to illustrate that there may be cases of medical and surgical treatment where even though both parents and doctors agree on a course of action in good faith, the treatment administered may not necessarily be in the best interests of the child. Sometimes, procedures carried out on an infant apparently in their best interests may later be a cause of regret to the child as an adult. The law in England and Wales will be examined to investigate other examples of controversial treatments of young children involving legal interventions to consider whether there are any parallels and what the implications of these might be to the intersex child. A model suggested by a Columbian legal case from 1995 is discussed. The courts ruled that infantile sex assignment surgery is lawful only following very stringent consent procedures. The possibility is considered that guidelines defining the consent procedure may afford some protection for the intersex child.

Beyond Discrete Categories: Studying Multiracial, Intersex, and Transgender Children Will Strengthen Basic Developmental Science

Developmental research on social categorization has overwhelmingly focused on perceptions about and experiences of individuals who are clear or prototypical members of discrete and usually dichotomous social categories. For example, studies of social categorization, stereotyping, prejudice, and social identity have generally explored how children reason about others who are gender-typical boys or girls or monoracial White or Black children. Similarly, research participants have generally been gender-typical and monoracial. However, our efforts to build theories that account for the true range of variation require acknowledging the increasing visibility of children who do not fit into these discrete categories and raise the question of whether existing theories can capture the dynamics that arise for them. Focusing on race and gender/sex, the social categories that have received the most attention in the developmental literature, we review research that has gone beyond simple dichotomies by including multiracial, gender-nonconforming, or intersex children, either as the targets of social perception or as participants themselves. We argue that this emerging work reveals problematic assumptions built into our theories and methods and highlights the value of building a more inclusive science.

Intersexuality and the ‘Right to Bodily Integrity’

In 2013, the Parliamentary Assembly of the Council of Europe passed a resolution on ‘children’s right to bodily integrity’. In the resolution, concerns were expressed for about practices carried out on children without their formal consent. Among these practices, female genital cutting (FGC), non-medical circumcision and ‘normalizing’ surgeries for intersex children were listed among these practices. As a result of the adoption of the resolution elicited, strong reactions, ensued especially from Jewish and Muslim communities, which widely practices male circumcision. Simultaneously, however, intersex activists welcomed the resolution, as it gave legitimacy to their long-standing call to establish a common framework for the evaluation of all invasive medical and surgical practices on children carried out without their informed consent ( Preves, 2005 ). This article uses an examination of the resolution to reflect on both the emerging concept of the ‘right to bodily integrity’ and on current developments in the field of intersex human rights in Europe. Firstly, the article considers the political process leading to the adoption of the resolution, in order to understand and appraise the limitations of the choice to use the framework of the right to bodily integrity to jointly address jointly issues of FGC, circumcision and intersex ‘normalizing surgeries’ jointly, without fully engaging with the cultural, religious and social factors underpinning each of these phenomena. Following this discussion, the article will further analyses the specific case of intersex rights, particularly in relation to the difficult balance between a medical and the juridical approach to intersexuality. This reflection will ultimately be useful to assess the role of the resolution in helping to subtract intersexuality from the sole gaze of medical practitioners at the advantage of a human rights approach which may best protect the interests of intersex children and adults.

Genital Autonomy as a Sexual Right

Objective: This talk will explore the ongoing and progressive ways of promoting genital autonomy for female, male and intersex children and youngsters. Within the last few years in various countries across Europe, especially in Germany, UK and the Nordic countries, the right to bodily integrity as a sexual right has been on the agenda creating constructive discussions as well as promising practices and statements. Design and Method: The key developments have been reflected in the governmental agencies, such as Nordic Ombudspersons for Children and the Council of Europe after persistent work in the field of NGO. Many organizations are working separately and increasingly together to develop advocacy strategies and lobby decision-makers. Also, general public is now better informed of the multiple problems of non-therapeutic genital surgery. Results: Even if governments act for the future, there is still a need to cater for the needs of those who are suffering from the loss of their sexual rights. Counsellors, therapists, psychologists and medical personnel need to be able to provide relevant data, support and advice. Conclusions: This progress is possible by educating people to combat the harmful traditions and by raising awareness of sexual rights.

Ordre social contre ordre « naturel » : la mention du sexe sur l’état civil des personnes intersexes

In many Western countries, as in France, sex is a characteristic of a person's legal identity and, as such, law requires that the birth certificate bear the mention of the child's sex even though in certain cases, accommodations can be made. However, in associating a person with one of the two sexual categories the law has always distanced itself from the reality of anatomical and biological evidence, chiefly concerned with instituting social differentiations, in line with political purposes, rather than with imitating a “natural order”. Therefore, transitioning from one to the other of the two categories is allowed for individuals who claim that their sexual designation at birth was erroneous or who no longer identify with the sex they were born with. Several of the world's legal systems do allow for changes in sex markers on documents, in a much freer and more liberal way, without requiring any sort of reconstructive surgery to change the body. But this progress in the right to self-determination is limited to persons over 18 capable of exercising their independence. The protection it offers against ostracism comes too late: intersex persons are most vulnerable in childhood, when they are still minors. Indeed, when an infant is born, it is the responsibility of the physician, and no longer that of the clerk at the vital records registry, to determine the sex of the child. If uncertainty remains even after all of the available evidence for evaluation has been assembled, doctors are urged by distressed parents to perform surgery on the child's genitals. Parents and physicians share concern to seek what they believe to be the child's best interest. What is more, this medical authority over children's sexual identity is backed up by law in many countries like France, where the child's sex must be indicated on the birth certificate. These practices have been finally challenged. Scholars, human-rights movement and activist groups have contested the legitimacy of sexual conformation surgery procedures imposed on the body of the intersex child, charging that they are irreversible despite the fact that some fail, and are only in very rare cases medically necessary; besides they might seriously damage the health and sexual sensitivity of intersex persons. If the rate of these “normalization” procedures has slowed down, it will take much more before such operations on the body of a minor have completely disappeared. In any case, the lobbying efforts of several activist groups are productive, by drawing the attention of European and international institutions, both political and judiciary, to the issue. The will of these institutions to promote human rights may prove to be a valuable instrument in protecting the infant's right to bodily integrity. Indeed, many Europeans reports have called on EU Members States to ban medically unnecessary “normalizing” treatment on intersex persons without their free and informed consent. Protection of the child's right to respect for his/her body could very well herald the end of the medicals hegemony over the gender identity of intersex persons.

Constructing the female body: using female genital mutilation law to address genital-normalizing surgery on intersex children in the United States

Purpose – The purpose of this paper is to explore the harms suffered by intersex children who are subjected to medically unnecessary genital-normalizing surgery (GNS) and the possible applicability of statutes prohibiting female genital mutilation (FGM) to certain cases of GNS to redress this harm in the USA. Design/methodology/approach – Consulting publications by medical researchers and intersex activists alike, this comment reviews the procedures undertaken as part of GNS (most commonly including clitoral reduction) and the reasons behind these procedures. It also parses the language of federal and state statutes prohibiting FGM in the USA. Findings – Surgical practices that include clitoral cutting when the procedure is not necessary to the health of the person on whom it is performed constitute FGM and are punishable under federal and certain state laws in the USA. GNS with clitoral reduction fits the definition of FGM because it is performed for cosmetic and social reasons, not medical necessity. Originality/value – Acknowledging GNS with clitoral reduction as FGM is a crucial strategy to ensure that female-assigned intersex children’s rights to bodily autonomy are protected to the same extent as non-intersex children’s rights. Intersex legal activists in the USA should press for enforcement of FGM statutes as to female-assigned intersex children until the medical practitioners who continue to defend and perform GNS see the procedures as illegal genital mutilation.

Davis, G.Contesting Intersex: The Dubious Diagnosis. New York: New York University Press. 2015. 240 pp $28 (pbk) ISBN 978‐1‐479‐88704‐0

Davis, G.Contesting Intersex: The Dubious Diagnosis. New York: New York University Press. 2015. 240 pp $28 (pbk) ISBN 978‐1‐479‐88704‐0

Intersexuality: On Secret Bodies and Secrecy

ABSTRACTThe article problematizes the treatment of intersex as a secret within the medical and family systems. Under the biosocial assumption that the “intersexual” body is pathological and requiring immediate surgical and hormonal regulation, intersex individuals are made to undergo a process of transforsexation, that is, the violent production of a normative masculinity or femininity by means of invasive clinical practices. In this process absolute secrecy serves as a central factor for the success of normalization. We argue that not only does “the secret” of intersex bodies become an active factor in the normalization of sex but also paradoxically it is counteracted by the body, which does not “speak” the language of “the secret” and continues to reproduce new forms of intersex combinations in response to ongoing medical intervention. Our analysis is based on case histories told by 6 mothers of intersex children and by 11 intersex adults, stories in which secrecy has been an essential theme in the process of transforsexation imposed by doctors and followed by the parents. Secrecy, even more than the surgery itself, was, in the experience of intersex adults, a great cause of confusion, anger, mistrust, and criticism. Because of secrecy, intersex children are thus deprived of a language to name their experience or interpret the sense of their body.