Intersex Children Research Articles

Neurologic Care for Transgender and Gender-Diverse People: A Review of Current Evidence and Clinical Implications.

To summarize the literature on neurologic care for transgender and gender-diverse (TGD) people and provide implications for clinical practice. There are limited data on the frequency and management of neurologic conditions among TGD people. TGD people have a higher prevalence of various neurologic conditions compared with cisgender or general population cohorts, including migraine, subjective cognitive decline, sleep disturbances, functional disorders, and cerebrovascular disease. Gender-affirming hormone therapy interacts with commonly prescribed neurologic medications and increases stroke risk among transfeminine people. Sex hormones and sex chromosomes may play a role in neurodegeneration and disability progression in neuroimmunologic diseases. Clitoral reduction surgeries on intersex children can cause neurologic disability and sexual dysfunction in adulthood. Socioeconomic disparities among TGD people contribute to health care barriers. Neurologists should consider the unique experiences and health care needs of TGD people in their clinical practice and research protocols.

Navigating the disclosure landscape: Parents' perspectives on healthcare professionals' role in supporting intersex children and families.

Intersex, an umbrella term, describes individuals with sex characteristics that cannot be exclusively categorized into binary definitions of male or female. The intersex community faces a lack of social visibility perpetuated by a history of medical discrimination and pathologization shaped by "normalizing" genital surgeries without the child's consent. Despite efforts to reform clinical practice, there remains a paucity of research centering the needs of the intersex community and their families. This study explored parents' perspectives on how healthcare professionals (HCPs), such as genetics professionals, can provide patient-centered education and support when parents first learn of their child's intersex variation, with the aim of offering recommendations to HCPs to promote parental adjustment and protect intersex children's right to autonomy. Thirteen qualitative semi-structured interviews were conducted with 14 parents of intersex children. Through reflexive thematic analysis, under the framework of an agency-based approach to intersex health, thematic categories were inductively conceptualized, including barriers and facilitators to HCPs' sensitivity and to parental adjustment in the early disclosure environment. Barriers to HCPs' sensitivity were imposed by educational, religious, or medical institutions, along with sociocultural prejudices and pathologizing language. Barriers to parental adaptation included uncertainty regarding their child's future, sociocultural gender norms, and unsuitable information provision. Incorporating parental needs in the disclosure environment can facilitate familial acceptance, including normalization of variations of sex characteristics (VSCs), enhanced medical education, facilitation of patients' navigation, and prioritization of parents' social support needs.

FGM and genital cutting across borders: cultural biases in the contestation of global human rights

ABSTRACT Global norms developed within the United Nations system have constructed female genital mutilation (FGM) exclusively as a set of non-Western practices. Consistent with these global norms, Western countries have adopted anti-FGM laws targeting non-Western practices while allowing Western genital modification procedures, including female genital cosmetic surgeries (FGCS), male circumcision, and genital ‘normalization’ surgeries performed on intersex children. These legal inconsistencies suggest that global governance of FGM represents an effort to maintain gendered and racialized social orders reflecting the values of dominant groups. This article examines global norms condemning FGM and anti-FGM laws in Western countries as sites of power and contestation of fundamental human rights.

“Support the Shit Out of Them:” Intersex Emerging Adults’ Recommendations for Caregivers of an Intersex Child

“Support the Shit Out of Them:” Intersex Emerging Adults’ Recommendations for Caregivers of an Intersex Child

Navigating the rights of intersex children in Zimbabwe

AbstractDespite the seemingly progressive strides made in promoting the rights of children in many African countries, the rights of intersex children remain hidden. This paper explores the lived experiences of intersex children in Zimbabwe drawing from in‐depth interviews conducted with intersex children aged between 8 and 16 years. The paper reveals a myriad of overlapping challenges faced by intersex children compounded by a lack of legal recognition and influence of cultural and religious discourses which threaten intersex children's sexual and reproductive health rights including their right to bodily autonomy and integrity, as well as their right to education.

The Rights of Intersex Children in Aotearoa New Zealand

AbstractThe UN Committee on the Rights of the Child has recommended that Aotearoa New Zealand ban unnecessary and unconsented surgery on intersex children. Yet, the overall number of surgeries being undertaken on the genital and reproductive organs of children remains largely unchanged. Neither is it clear how many surgeries were undertaken on intersex children and what information and explanations were given to children and their families as to why the surgery was necessary. Culturally sensitive, medical, psychosocial and legal research must inform decision-making around surgical interventions on children with variations in sex characteristics, in order to realise the rights of intersex children in Aotearoa New Zealand.

African Vernacular Symbols of Black Intersex Children in Sinethemba Ngubane's Installations (2007-2016)

African Vernacular Symbols of Black Intersex Children in Sinethemba Ngubane's Installations (2007-2016)

Review of “How the Clinic Made Gender: The Medical History of a Transformative Idea”

Using a variety of primary sources, Sandra Eder documents the “birth” of gender through the lens of the decades-long process of physicians developing protocols for treating intersex children (formerly known as “hermaphrodites” and now increasingly understood as individuals with disorders of sexual development [DSD]). This book shows just how gender was constructed, modified, and revised as part of the work to treat intersex and later transgender individuals. Gender as a concept “underwent many transformations in the decades after it was first formulated in the [Johns] Hopkins [Hospital] clinic” (p. 186). Once cortisone was synthesized and became more widely available, concern shifted from keeping children with congenital adrenal hyperplasia (CAH) alive and thriving to determining how they could live their best lives in the context of existing cultural norms. Children born with CAH have unusual patterns of chromosomes, genitals, and physical appearance, making it a source of intersex traits. Long before the rest of the world accepted the notion of gender as a social construction, these physicians were grappling with the realization that their patients were better served by an approach that determined not their “true” sex, but the sex in which they could live their most well-adjusted life.

Human rights violations in normalizing procedures on intersex children.

Intersex children in Brazil are still subjected to "normalizing" surgical procedures and subsequent bodily interventions to make their bodies conform to binary views of sex. Resolution n. 1,664/2003 of the Brazilian Federal Council of Medicine legitimizes interventions upon intersex bodies, being the only national normative instrument that address the subject. However, the demands of international intersex political activism have denounced how early childhood interventions for sex designation mutilate children's bodies and violate a number of human rights. This research discusses how early, irreversible, and normalizing procedures performed without the intersex person's consent are human rights violations. Based on the concept of epistemic (in)justice, we first look at the disputes surrounding the evidence that underpin medical practices. We demonstrate how such procedures violate human rights to health, body integrity, autonomy, and sexual and reproductive rights, analyzing which strategies were put into place to prevent them. We propose that intersex people be at the center of decisions regarding their bodies, that non-surgical paths be discussed with patients and their family members, and that early, invasive, mutilating, harmful, cosmetic, and unconsented surgical interventions on intersex children be prohibited. Guiding tools must introduce changes into its regulatory bias to, from an interdisciplinary perspective, include bioethical and human rights bodies, as well as intersex activists.

Violações de direitos humanos nos procedimentos normalizadores em crianças intersexo

Intersex children in Brazil are still subjected to “normalizing” surgical procedures and subsequent bodily interventions to make their bodies conform to binary views of sex. Resolution n. 1,664/2003 of the Brazilian Federal Council of Medicine legitimizes interventions upon intersex bodies, being the only national normative instrument that address the subject. However, the demands of international intersex political activism have denounced how early childhood interventions for sex designation mutilate children’s bodies and violate a number of human rights. This research discusses how early, irreversible, and normalizing procedures performed without the intersex person’s consent are human rights violations. Based on the concept of epistemic (in)justice, we first look at the disputes surrounding the evidence that underpin medical practices. We demonstrate how such procedures violate human rights to health, body integrity, autonomy, and sexual and reproductive rights, analyzing which strategies were put into place to prevent them. We propose that intersex people be at the center of decisions regarding their bodies, that non-surgical paths be discussed with patients and their family members, and that early, invasive, mutilating, harmful, cosmetic, and unconsented surgical interventions on intersex children be prohibited. Guiding tools must introduce changes into its regulatory bias to, from an interdisciplinary perspective, include bioethical and human rights bodies, as well as intersex activists.

Intersex child’s parents’ negative experiences – case study

Intersexualism is often treated as a secret in medical and family systems. According to the thesis that intersex body is pathological and requires immediate surgical and hormonal regulation, intersex persons are subject to the process which involves rapid production of normative masculinity or femininity through invasive clinical practices. The goal of the study was to diagnose the experiences of parents of an intersex child with searching for support during the treatment for both the child and themselves. The study was conducted by means of individual semi-structured interview. The results are presented as a case study. It was shown that parents do not always receive the necessary social and medical support, and their children are treated as sensations and pathologies, regardless of the fact that empathy and acceptance are critical for making the right treatment-related decisions.

Experiences of parents of an intersex child – A case study

Intersexuality represents a wide range of rare congenital disorders with diverse pathophysiology which affect the development of chromosomal, gonadal or anatomical sex and which often require specialist help from the early childhood. The issue of intersexuality is rarely discussed outside the clinical environment. Meanwhile, the social situation of intersex people is often particularly difficult, which is largely due to ignorance and social unawareness about human biodiversity. Therefore, a pedagogical approach to these issues, taking into account the experiences of parents of intersex children, seems to be a necessity. The research aimed to identify and reconstruct parents’ experiences regarding the treatment of their intersex child. The study used the interpretative paradigm and the case study method, and it focused on the individual, future-oriented action and understanding of social interpretations. The findings show that parents of intersex children need the support of doctors, psychologists, family as well as safe social environment.

Right To Genital Integrity: Law, Limbo and The Status of Intersex Children in India

As the movement for recognizing queer rights in India gains momentum, it is critical to evaluate the rights of a particularly neglected group within the LGBTQIA+ community: intersex children. Since 2018, the Indian Supreme Court has decriminalized consensual adult same-sex relationships and has recognized the right to privacy—including decisional and bodily privacy—as a fundamental right guaranteed by the Indian Constitution. However, even after these crucial decisions, intersex children are still subject to medically unnecessary surgeries without their consent. Many suffer long term consequences from such disentitlement. In this Article we examine the rights of children from an ethical and legal perspective in the Indian context. Drawing on classical, feminist, and queer bioethics frameworks, we briefly review the ethical violations inherent in performing genital surgeries on intersex children without their consent. We analyze India’s international legal obligations and argue that those obligations fill a significant gap in India's jurisprudence on sexual minorities. We also analyze the domestic legal framework, studying key decisions of various high courts, including the Indian Supreme Court, that have recognized the right to self-determination of gender identity. Finally, we suggest possible alterations to the current legal framework that, if implemented, will help further legal recognition of the rights of intersex children.

Intersex in Italy: At the Source of the Complexity?

Focusing on the Italian legal scenario, the paper examines medical practices that impose cosmetic surgeries on intersex children. Carried out with the aim of adjusting their genitalia to a perfect male or female body, these practices infringe upon the fundamental rights of the children subjected to them and demand new ways of protection. The paper explores the legal approaches that could be adopted to challenge them and to ensure the protection of children’s rights.

Normalizing intersex children through genital surgery: the medical perspective and the experience reported by intersex adults

This paper explores the conceptions of specialized physicians regarding intersex child surgery, and contrasts them with the experiences of intersex adults. The gap between the views of health personnel—who affirm that they are “doing their best”—and those of intersex persons—who report the adverse consequences of surgery—highlights the need to stop unnecessary normalization surgeries in children. The findings of this study suggest that bridging the gap between the medical perspective and the experience of intersex people requires opening direct channels of communication among all those involved in the clinical process, incorporating intersex individuals into bioethics committees, encouraging contact with the parents of intersex children, implementing regulations that unambiguously delay or prohibit unnecessary interventions, promoting a debate on relevant ethical principles and human rights to protect the interests of all intersex people, and disseminating the contents of such a debate.

Collaborative Portraits for Intersex Justice

Collaborative Portraits for Intersex Justice

Exploring opposition to ritual female genital cutting since the first U.S. federal prosecution: the 2017 Detroit case.

In the U.S., the 1996 federal law banning medically unnecessary female genital cutting (FGC) of minors was rendered unconstitutional in 2018 in the Nagarwala case. This paper highlights legal developments at the federal and state levels in the U.S. since this trial. It looks at anti-FGC frameworks in other Western countries such as Australia, the UK, France, and Switzerland for comparison. The Australia High Court ruled in favor of a broader interpretation of the words "mutilate" (as in "female genital mutilation" or FGM) and "clitoris" in 2019. In the UK in 2019, a mother of a three-year-old became the first person convicted of "FGM". In the U.S., 2020 federal legislation strengthened opposition to FGC of minors. Twenty-one U.S. states have developed legislation since 2017 that was enacted to oppose such FGC. The 14th Amendment to the U.S. Constitution affords equal protection under the law without regard to sex or gender, prompting increased inclusion of neonatal male circumcision and normalizing surgery for children with intersex traits in the FGC legislation debate. More widely, the principle of equal application of the law raises questions about the legality of adult female genital cosmeticsurgery where adult "FGM" is banned. Tensions between state law and religious law introduce complexities to allowing religious and cultural communities to practice their preferred way of life when this conflicts with human and civil rights afforded to individuals within secular liberal democracies. For consistency, the anti-FGC framework in the U.S. may need to shift towards calls to protect all children, regardless of sex characteristics (i.e., including male and intersex children) from medically unnecessary, non-consensual genital cutting.

An exploratory study of the retrospective educational experiences of young intersex adults

AimWhile there is increasing awareness of best practice in LGBT-inclusive education, little is known about the specific educational issues facing intersex individuals, and how the education system could be improved for this marginalised group.MethodThis paper reports an empirical study involving semi-structured interviews with two young intersex adults, to understand their retrospective, lived educational experiences and ascertain their views on improving educational practice around intersex issues.FindingsRelevant themes identified were knowledge and understanding, impact of diagnosis, information sharing, journey of identity acceptance, protective factors, and wellbeing.ImplicationsRecommendations are made regarding how schools and professionals might support intersex children and young people during their education.

Интерсекс-дети в культуре бинарности: ущемленный пол

The article examines the role of embodiment, namely the characteristics of sexual development, in identity development in childhood. It raises a question of the social and psychological consequences for children with intersex variations (with and without medical intervention), whose knowledge of their bodies can be severely limited. It is concluded that the conceptual inaccuracies in the existing definitions of sex and gender affect the weak language tools for polymorphic sexual identification. In the process of social development, the child’s body is both an object of understanding and an agent acting in interaction. Accordingly, the physiological characteristics of the body are taken into account by the child when constructing an identity, ensuring his self-presentation and driving the choice of communication strategies. Intersex children frequently have distorted or insufficient information about their own bodies, because their parents consider this information an obstacle to successful social adaptation in a hierarchical gender environment. The main factor in the actualisation of intersex topic was feminist research. These studies have challenged the binary definition of gender, discovering significant inconsistencies in the dominant biological interpretation. The article comes to the following conclusions. First, the dichotomous matrix of ideas about sexuality prevents a neutral attitude to the sexual anatomy of individuals, which underlies all existing social relations. Male anatomical features are given a symbolic meaning of power, and female that of subordination. Second, conceptual inaccuracies in the existing definitions of sex and gender affect the weak language tools for polymorphic sexual identification. Third, in the post-Soviet discourse at the state (legal, medical, political, etc.) and interpersonal (family, peer) levels, intersex children are a socially excluded and unrecognised group, deprived of legal protection.

Репрезентация феномена интерсекса в современной культуре: кинематографический дискурс

Today, significant changes are taking place in the approach to the study of many sociocultural phenomena. Duality and polarity of their perception and analysis are being mitigated, alternative facets of the familiar and the generally accepted are coming to light, a number of “marginal” ideas are becoming the “new norm”. The research paradigm of the 20th – 21st centuries pays special attention to non-binary gender. Modern researchers focus on such issues as self-identification and search for gender identity, mechanisms of gender construction, variability of sex-role and identification models, non-conventional forms of gender identity (transgender and agender, intersexuality, etc.), as well as their representation in contemporary culture. One of such nonconventional phenomena of culture today is intersexuality, the current form of the well-known philosophical idea of androgyny. Intersex as a phenomenon of contemporary culture is considered as an element of the emerging non-binary gender system. Nowadays, intersex is not only the denomination of a person with biological characteristics atypical of the binary gender paradigm, but also the name of a distinctive culture discussing the problems of this new kind of people, who have become a significant part of our society. This article studies the representation of the intersex phenomenon in contemporary culture through the lens of cinematography. The sociocultural status of intersexuality explains the increasing quantity and thematic diversity of cinematic material. Intersexuality is a subject of active artistic reflection of many contemporary directors (L. Puenzo, C. Lavagna, J. Solomonoff, R. Féret, S. Savory, etc.), the discussion of acute social, legal and ethical problems being their focus. Thus, the leading themes are as follows: self-identification of intersex people and their search for gender identity; the problem of medicalization of intersex people and the legality of “corrective”/ “normalizing” operations from both medical and ethical points of view; parent–intersex child relationship; socialization of intersex teenagers and social acceptance of this new type of person.