Intersex Children Research Articles

La Temática de lxs Intersex desde una Perspectiva Jurídica: Lineamientos para una Reparación Integral

Las personas intersex, es decir, aquéllas cuyo sexo genital/anatómico, gonadal o cromosómico no corresponde completamente a lo que ordinariamente se catalogaría como un “cuerpo de hombre” o un “cuerpo de mujer” y, en consecuencia, ostentan características típicas de ambos sexos en diferentes grados, han sido y siguen siendo objeto de invisibilización y patologización. El enfoque dominante para “tratarlas” ha sido, hasta el momento, el de someter a los bebés intersex a intervenciones quirúrgicas y tratamientos hormonales de inmediato con la finalidad de “normalizar” sus cuerpos y asignarles un sexo que se ajuste a la dicotomía hombre-mujer. Sin embargo, esta práctica implica una vulneración de varios derechos fundamentales de lxs niñxs intersex, lo cual deriva, necesariamente, en el derecho de reparación que tienen éstxs si han sido sometidos a cirugías y tratamientos de “normalización” de sus cuerpos, o de asignación de sexo, sin su consentimiento. Este análisis tiene por objetivo aproximar al lector, de manera breve y general, al contexto de las personas intersex, introduciendo conceptos clave para el resto del análisis. Además, se expondrán los fundamentos sobre los cuales se asienta la práctica dominante de “corregir” los cuerpos de los bebés intersex y se confrontará esta postura con el enfoque contrario, que se sostiene en el principio de la autonomía de la voluntad. Asimismo, se introducirán brevemente conceptos fundamentales al hablar de derechos de lxs niñxs, como el de interés superior, ejercicio progresivo y evolución de facultades. Posteriormente, se procederá, a modo de conclusión, a determinar las violaciones a los derechos fundamentales de las personas intersex que tienen origen en dichos tratamientos invasivos e irreversibles, y finalmente se expondrán propuestas de reparación. .

Ethical Decision-Making in The Dilemma of the Intersex Infant

The Making Ethical Decisions about Surgical Intervention (MEDSI) tool is designed to guide health care professionals, patients, and families faced with ethically charged decisions regarding surgical interventions for pediatric patients. MEDSI is built on the principles of beneficence, nonmaleficence, and patient autonomy and created to promote truth-telling, compassion, respect for patient cultural and religious preferences, and appropriate follow up in the clinical setting. Following an overview of the 8 steps that compose MEDSI, the tool is applied to the management of intersex infants. The birth of a child with a disorder of sexual development (DSD) and ambiguous genitalia presents an ethically challenging situation for the family and health care team. The use of the MEDSI model is demonstrated in a case study involving the decision of surgical intervention in the management of an intersex child.

Girl? Interrupted

Girl? Interrupted

The Ethics of PGD for Intersex Conditions: Problems With the Diversity Argument

In his well-crafted target article, Sparrow (2013) explored the issue of preimplantation genetic diagnosis (PGD) to avoid the birth of intersex children. After discussing a variety of arguments, he...

Intersex Bodies as States of Exception: An Empirical Explanation for Unnecessary Surgical Modification

In 2006, the official journal of the American Academy of Pediatrics published a consensus statement on the medical management of intersex traits. Like the profession's first statement, the revision advised against unnecessary surgical modifications. Yet, such surgeries continue in contemporary US society, despite the professional stance and public critiques from intersex activists. Relying on sixty-five interviews with medical professionals, individuals with intersex traits, and parents of intersex children, this article examines why the practice continues. It then analyzes how medical professionals justify their medical interventions and shows that these justifications convey a "covert necessity" to the parents of intersex children. Intersex bodies, situated on the threshold of the gender structure, are treated as "states of exception" where unnecessary medical interventions serve to uphold the sex binary. The article argues that medical interventions aimed at eliminating intersex traits will continue until society disentangles sex from gender, embraces gender fluidity, and no longer constructs intersex bodies as deviant or abnormal in order to disallow or erase them.

Advancing adolescent capacity to consent to transgender-related health care in Colombia and the USA

Many sexual and reproductive health care services, including gender reassignment treatment, facilitate reproductive autonomy and self-determination of gender identity. Individuals who are unable to refuse or consent to these services on their own behalf, such as adolescents, are at risk of violations of their rights to privacy and self-determination. This paper explores the issue of adolescent capacity to consent to transgender-related health care in Colombia and the United States (USA), focusing on the two countries' struggles to balance the rights of adolescents to make autonomous and confidential decisions with the rights of their parents. Unfortunately, many countries, including Colombia and the USA, have been slow to develop jurisprudence and legislation that explicitly protect transgender adolescents' capacity to consent to gender assignment treatment. Courts in Colombia, however, have developed jurisprudence that restricts parents' ability to make medical decisions on behalf of their infant intersex children, which lays a strong normative foundation for advancing adolescent capacity to consent to transgender-related health care. It is a strategy that may prove effective in other countries in the Americas, even those with different frameworks for adolescent medical decision-making capacity, such as the USA.

Genital Autonomy, Children’s Rights, and Competing Rights Claims in International Human Rights Law

Claims that genital autonomy should be considered a human right call into question medically unnecessary genital alterations, including genital cutting of both boy and girl children, the forced or coerced circumcision of adults, and surgical alterations performed on the genitals of intersex children prior to the age of consent. To date, global norms suggest only a narrow applicability of any right to genital autonomy. International organizations, states, and non-governmental organizations increasingly condemn genital cutting of girls and women but generally tolerate both the genital cutting of boys and men and the surgical alteration of the genitals of intersex children. In examining assertions that genital autonomy should be considered a human right, the article considers competing rights claims, including religious and cultural rights, parental rights, and contending perspectives on health rights. Ultimately, this article highlights the limitations of international human rights law as a tool for promoting a right to genital autonomy.

Tools for Teaching Gender and Sexuality in Health and Medicine

Katrina Karkazis's Fixing Sex: Intersex, Medical Authority, and Lived Experience. Durham: Duke University Press, 2008 Jennifer Brier's Infectious ideas: U.S. Political Responses to AIDS Crisis. Chapel Hill: University of North Carolina Press, 2009 Teaching gender and sexual of medicine, I sometimes struggle to find material that fits needs of undergraduates, especially those at introductory and intermediate levels. Too often, I feel stuck between popular material that has an inadequately critical approach (if any critical angle at all) and advanced, complex texts that I love and lean on in own research, but that leave students struggling and frustrated. For that reason alone, I celebrate publication of both Fixing Sex by Katrina Karkazis and Infectious Ideas by Jennifer Brier, which treat body politics of intersexuality and HIV/ AIDS, respectively. IVe taught from Karkaziss book in several courses already, and find that her extremely fluent prose and clear arguments work well for both undergraduates and graduate students. I haven't yet taught Brier book, but expect that it, too, will fit bill. Fixing Sex is a theoretically sophisticated and nuanced ethnography of medical practice related to intersex conditions - now officially known as disorders of sex development/ or DSD, referring to conditions in which development of physical sex is atypical, especially when genital morphology is not typical for chromosome pattern. (I with Karkazis when she writes that my sense is that this term [DSD], though in some ways less culturally loaded than intersex, still leaves intersexuality fully medicalized and construes gender difference as a disorder requiring treatment - a position with which I do not agree [18]. Like her, I therefore use term intersex, though it, too, is imperfect, and I am sensitive to fact that either term will contravene self-chosen descriptor of many people with conditions that get subsumed under these umbrellas.) Drawing on fifty-three original, in-depth interviews with clinicians, intersex adults, and parents of intersex children or adults, as well as participant observation in a huge range of public venues, Karkazis offers most rounded and in-depth view of intersex that is available from any of recent and not-so-recent texts on this subject. The book has already been widely reviewed and rightfully praised, so I will focus on those aspects that make it especially useful for teaching. First, triangulation of voices (clinicians, parents, and people with intersex conditions) is a structurally effective technique for decentering expert views on intersex, whether that expert be a pediatric endocrinologist or a gender studies scholar. Karkazis uses her interview material with great sensitivity, providing both lengthy quotes and necessary context for appreciating subjects' perspectives. Second, she explores uncertainty, subjectivity, and multiplicity that underlies clinical decisions and evaluations in this realm, providing a very student-friendly introduction to critical feminist studies of medical practice. Third, Karkazis covers historical ground that students are most likely to have encountered, specifically David Reimer case (also known as the John/Joan case); offering important context and correctives to most widely known (and badly flawed) account of this case, book As Nature Made Him by John Colapinto (2006). Fourth, Karkazis s account is a sharp rebuttal of idea that intentions are synonymous with good outcomes (267), a lesson that I find is useful over and over again. Although Karkazis clarifies that book is not technically an outcome study of medical treatment of people with intersex conditions, and in spite of a generous and empathie tone toward clinicians whom she identifies as deeply committed to their patients, Fixing Sex offers a devastating portrait of results of medical treatment in this realm. …

Androgen Insensitivity Syndrome with Male Sex-of-Living

Recent articles (Kulshreshtha et al., 2009; Meyer-Bahlburg, 2009, 2010; Nourizadeh& Hashemzadeh,2008; T’Sjoenetal., 2011)regardingmalegender identity incompleteandrogeninsensitivity syndrome (CAIS) prompt me to report my own similar history of male upbringing in spite of Quigley grade 5 (i.e., close to CAIS in phenotype, but with slight clitoral enlargement and partial labial fusion) (Quigley et al., 1995), partial androgen insensitivity syndrome (PAIS), and change to female sex-ofliving in early adulthood. I am also seeking to clarify some minor points. MeyerBahlburg (2009) and Zucker (1999) have both written that there hadbeenapreviouscaseofCAISwithmaleupbringingreported by Money (1991). I know that this patient actually had partial AIS because I am his cousin. He (my cousin) was also described by Money and Ogunro (1974). Another minor point: Crawford et al. (1970) reported my age at mastectomy as 14 and Money (1991) reported it as 15. I was actually still age 13 at that time. I would like to offer my thoughts based on first-hand experience of a situation similar to that of the patients in the aforementioned articles with CAIS living as males. An underlying, unquestioned assumption in much writing on changes of sex-ofliving is that ‘‘gender identity’’ is an imperative, overriding psychological force. My own pediatric endocrinologist (J. D. Crawford, M.D. of Massachusetts General Hospital) told me when I was age 21 that gender identity was‘‘an unshakable conviction.’’However, he never asked me whether I experienced it that way. My actual inner experience was of gender identity as an ordinary, malleable conviction, vulnerable to changes in perception of facts. As a child, I had been told that medical authorities hadconcludedthat Iwasmale.However, later,asayoungadult, I revised this to the belief that I was actually a person with AIS who should more appropriately be living as female. Perhaps those interested in the psychology of gender identity should pause to question the belief that‘‘gender identity’’always exists as a profound, unalterable psychological force or drive. Some seem to be using as their model for gender identity the compulsion of transsexuals to live as their target gender, no matter what the impediments. If transsexuals did not have such a need, they would not be transsexuals, but it is a great leap to assume that all other persons’ experience of gender identity is of the same nature. Perhaps what clinicians perceive as‘‘core gender identity’’ is sometimes not a deep and integral component of a patient’s psychological makeup, but instead a somewhat superficial reaction and adaptation to the social and medical predicament the patient perceives himself/herself to be in. The apparent male gender identity of the patients in the Kulshreshtha et al. and T’Sjoen et al. articles might be partly, or even wholly, explicable as the product of the patients’ having been told they were, in some sense,‘‘really’’male, than having their reactions reinforced by counselors. The authors seek an explanation in chromosomes or genetics or brain differentiation, but perhaps what they are seeing is not much more than their own ideas being recycled back to them. A person’s actions may be controlled, not only through overt or inchoate coercion, but also through their being misinformed or under-informed. A child’s apparent‘‘gender identity’’may consistofhisorherperception ofan immutable reality. Children knowthat, in theordinarycourseofevents,peopledonotchoose their own sex. They may perceive the word of an authority like a physician, not merely as one human being’s opinion, but as a simple statement of an unchangeable fact. My own history indicates that clinicians are not extremely perceptive about intersex children’s gender identity and can even be complexly wrong about it. Records from when I was P. Cadet (&) White River Junction, VT 05001, USA e-mail: peggycadet@gmail.com

Medieval Silence and Modern Transsexuality

Psychoanalysis and science respond to the transsexual claim of wrongful embodiment with radically different models of treatment. Yet both disciplines construct the figure of the transsexual from a heteronormative and patriarchal perspective. The 13th-century text Le Roman de Silence, which deals with the gender transformation of its heroine, Silence, is similarly biased. Moreover, this romance theorizes a relationship between gender and the body that closely parallels the psychoanalytical and scientific discourses about transsexuality. Silence's social isolation confirms the varying levels of dislocation that transsexed individuals, both male and female, attribute to their condition, but her powerlessness to determine her own gender identity is more akin to the modern treatment of intersex children. The ambiguity surrounding Silence's return to femininity at the end of the romance, however, suggests that the medieval author can see beyond the binary system of gender that structures his society and that continues to structure ours.

Intersex Mental Health and Social Support Options in Pediatric Endocrinology Training Programs

ABSTRACT The birth of a child with an intersex condition is often an emotionally stressful event for parents. Preparation and ongoing support systems could be beneficial to both parents and children and would alleviate some of the shame and isolation associated with intersex conditions. To assess the extent to which psychological support is available, a short e-mail survey on this topic was sent to the directors of 50 pediatric endocrinology fellowship training programs (PEFTPs), who are most likely to evaluate and treat intersex children and their parents. Of the 29 PEFTPs that responded, 69% offer psychological support and 58% have a mental health specialist on staff. However, only 19% of patients or families receive emotional support during diagnosis and only 15% receive support after diagnosis. We found two barriers that prevent patients and families from receiving psychological help from their intersex care team. First, there is a lack of training for mental health professionals regarding the needs of intersex patients and families. Second, some families refuse help even though it is offered. This study reveals that further research is needed to overcome these two barriers regarding mental health treatment of intersex patients and families.

‘They did not have a word’: The parental quest to locate a ‘true sex’ for their intersex children

Given the paucity of research in this area, the primary aim of this study was to explore how parents of infants with unclear sex at birth made sense of ‘intersex’. Qualitative methods were used (semi-structured interviews, interpretative phenomenological analysis) with 10 parents to generate pertinent themes and provide ideas for further research. Our analysis highlights the fundamental shock engendered by the uncertain sex status of children, and documents parental struggles to negotiate a coherent sex identity for their children. Findings are discussed in light of the rigid two-sex system which pervades medicine and everyday life, and we argue that greater understanding of the complexity of sex and gender is required in order to facilitate better service provision and, ultimately, greater informed consent and parental participation regarding decisions about their children's status.

New Directors/New Films, New York

March 26-April 6, 2008 New Directors/New Films (ND/NF) the single most important film survey in North America. It programmed by the Museum of Modern Art and the Film Society of Lincoln Center together to showcase emerging and demanding cinema that sounds the clarion call for the Future of Film. Not bound by a conventional definition of emerging, curators rather choose films of merit that otherwise would rarely have a chance to be seen. Danielle Arbid's A Lost Man (LN/FR, 2007) ND/NF's most challenging film. Challenging because it humanizes Arab men and women in a way rarely seen in Western cinema. The gaze secular, female, and Arab. Despite Arbid's declaration that she is not interested in either politics or gender, the film itself speaks the language of political domination, fundamentalist policing of gender and sexual activity, politics of objectification, and the cause and effects of emotional and economical plunder. Arbid seems schooled in the sensuality of Henry Miller rather than in the rejection of sentimentality of Anais Nin. She bravely breaks taboo by showing Arab female prostitutes enjoying their sexual work. They reject any notion of victimization. She also navigates the conflicting feelings these women have for both the Western man (here a French photographer who, vampire-like-a postmodern colonial gestalt-seeks to steal the soul of the Arab women with whom he having sex by photographing them naked during intercourse) and the Arab man, with whom he travels, who feels himself an outsider even in his own community. Azazel Jacobs's Momma's Man (US, 2008) the worst-titled indie film of the year, but it captures the yearning to go home (literally) that a whole generation of twenty- to thirtysomethings are experiencing. Except home here an artist's loft owned by the director's real artist parents (who play the parents) in this dramatic fiction that seamlessly crosses reality and fantasy. The film shows how dysfunction not always easily understood and that adulthood not simply chronologically defined. It offers a new look at the American family dynamic that centers on a very male fear of responsibility and the adolescent nostalgia for being taken care of while rebelling against authority. Thanos Anastopoulos's Correction (GR, 2007) an Athens-based, color-drained, contemporary story of identity, belonging, vengeance, and forgiveness, that echoes classical Greek drama. With minimal dialogue, Anastopoulos creates a canvas of humanity, through light and shadowing reflective of early-twentieth- century Italian cinema, and slowly reveals a tale of national identity and fear of immigrants. He captures, in faces, both soul passion and dark emotion. Ostensibly a story of amends about a recently released prisoner, the film challenges the viewer to unravel the mystery of what happened and where fault lies. This stunning filmmaking that transcends specifics of location and resonates as a contemporary nomadic journey through the meaning of ethnic identity in a world made smaller by globalization. Lucia Puenzo's XXY (AR/SP/FR, 2007) from Argentina, the first narrative film to address intersex. This word has replaced hermaphrodite as the politically correct term for a person born with both male and female genitals. Usually one more dominant than the other. Puenzo one-ups Boys Don't Cry (Kimberly Peirce, US, 1999) with a failed attempt to tell a very serious story of an intersex child whose parents have brought him-her up with little psycho logical or medical intervention. The child allowed to become a teenager with awakening sexual desire and a serious sex identity problem. Like Boys Don't Cry, Puenzo sensationalizes the subject so an audience can distance itself from the frank reality of a body out of place in the world around it. Puenzo actually uses all the emotional tools of the faux serious, middle-class tele-novella to present a creepy voyeuristic view of a potential suicide situation. …

‘Is it a Boy or a Girl?’: Intersex Children Reshape Medical Practice

‘Is it a Boy or a Girl?’: Intersex Children Reshape Medical Practice

Germ Cell Tumor Showing Partial Trisomy 1 in a Gonadectomized Intersex Child With Monosomy X and Double Y Mosaicism

High incidence of germ cell tumors arising from dysgenetic gonads in patients with sexual chromosome abnormalities has been described, especially in patients with a Y chromosome bearing cell line. Here we report a 14-year-old patient with ambiguous genitalia. Constitutional karyotype showed 45,X/46,X,derY [?t(Yp;Yq)] mosaicism. The patient developed an abdominally located mixed malignant germ cell tumor 5 years after the removal of the dysgenetic gonads. Tumor karyotype showed partial trisomy 1q, a derivative 8q, and a hyperdiploidy with +X, +7, +12, +15, +19, +21, and an unidentified marker.

Consensus Statement on Management of Intersex Disorders

The birth of an intersex child prompts a long-term management strategy that involves a myriad of professionals working with the family. There has been progress in diagnosis, surgical techniques, understanding psychosocial issues and in recognizing and accepting the place of patient advocacy. The Lawson Wilkins Paediatric Endocrine Society (LWPES) and the European Society for Paediatric Endocrinology (ESPE) considered it timely to review the management of intersex disorders from a broad perspective, to review data on longer term outcome and to formulate proposals for future studies. The methodology comprised establishing a number of working groups whose membership was drawn from 50 international experts in the field. The groups prepared prior written responses to a defined set of questions resulting from an evidence based review of the literature. At a subsequent gathering of participants, a framework for a consensus document was agreed. This paper constitutes its final form.

Consensus statement on management of intersex disorders

The birth of an intersex child prompts a long-term management strategy that involves a myriad of professionals working with the family. There has been progress in diagnosis, surgical techniques, understanding psychosocial issues and in recognizing and accepting the place of patient advocacy. The Lawson Wilkins Paediatric Endocrine Society (LWPES) and the European Society for Paediatric Endocrinology (ESPE) considered it timely to review the management of intersex disorders from a broad perspective, to review data on longer term outcome and to formulate proposals for future studies. The methodology comprised establishing a number of working groups whose membership was drawn from 50 international experts in the field. The groups prepared prior written responses to a defined set of questions resulting from an evidence based review of the literature. At a subsequent gathering of participants, a framework for a consensus document was agreed. This paper constitutes its final form.

O sexo dos anjos: um olhar sobre a anatomia e a produção do sexo (como se fosse) natural

Este artigo analisa as representações corporais e práticas sociais acionadas no que se refere às crianças e jovens intersex, contrastando a perspectiva de profissionais médicos com a dos familiares envolvidos. Parte-se de dois eixos analíticos: o olhar generificado sobre a anatomia e as visibilidades/invisibilidades do sexo. Os argumentos centrais propostos são que o sexo é tão construído na cultura quanto o gênero e que as fronteiras entre o natural e o não-natural são facilmente borradas quando se trata de definí-las a partir do que é considerado dentro ou fora das normas sociais.

Consent to Treatment for Transgender and Intersex Children

More than a decade has passed since the landmark High Court decision in Marion’s Case,1 where the Court authorised the sterilisation of a young woman who suffered from a disability. Recently, the principles established in that case were applied by the Family Court in a different context – for the provision of hormonal treatment for a 13 year old child,2 some aspects of which are irreversible. Previously, the Family Court had authorised gender reassignment surgery for a child suffering from a physical, congenital condition,3 but notably in Re Alex, the subject child suffered no identified physical condition indicating treatment, but from an identified psychological condition, gender identity dysphoria. This article considers the issues raised by recent applications of the principles relating to the capacity of children to consent to medical treatment, including the decision in Re Alex and the application of those principles to transgender and intersex children. While not all children or adults who identify as transgender or intersex choose the long and difficult path of gender reassignment, some will choose surgical gender reassignment or hormonal treatment at some stage of their lives. In cases where it is proposed that a minor undergo such treatment, the application of the principles of child consent poses particular difficulties.

Intersex embodiment: when health care means maintaining binary sexes

The treatments carried out with intersex children for the purpose of helping them live in a normatively gendered world have raised increasing levels of controversy in the past decade. This paper outlines key debates that are taking place highlighting the relevance of critical approaches to evidence. It points to the value of working across disciplines and epistemological frameworks in order to fundamentally re-think existing clinical practice in terms of ethical concerns and in terms of the reported experiences of intersex people.