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The Rights of Children in Biomedicine
Kavot Zillén, Jameson Garland, & Santa Slokenberga
Commissioned by the Committee on Bioethics (DH-BIO) of the Council of Europe
The Committee on Bioethics of the Council of Europe commissioned this study to identify potential areas of heightened concern for the rights of children that may be unfavorably affected by scientific advances and uncertainties in biomedicine. This report is the result of that study. It provides substantive illustrations of the diversity of problems generated by biomedical developments, including the expanded use of certain biomedical procedures, emerging technologies, and innovative therapies. It also addresses uncertain risks to children through the continuation of longstanding biomedical practices that lack sufficient scientific support.
The Rights of Children in Biomedicine: Challenges posed by scientific advances and uncertainties
3. Interventions at the earliest stage of human development that affect the future child
3.3 Corrective procedure in utero
3.3.1 Scientific background
In utero medication
p.28 Even without regard to the inherent risk of using medication during the earliest stages of human development, however, the use of these therapies raises questions about whether the risk to the patient is actually in the interest of the future child. Where a fetus is at risk of congenital adrenal hyperplasia (CAH), parents have been offered administration of dexamethasone (DEX) in utero, in order to prevent genetically female children with CAH from virilizing, which is perceived as an intersex condition in which the child’s clitoris appears more masculine – in many cases where the child appears typically male and may even identify as male. While some forms of CAH are lifethreatening, fetal-DEX is only designed to respond to the virilizing condition in the affected children – primarily to avoid the surgeries and other “gender-normalizing” interventions now criticized as human rights violations, as discussed in Chapter 5. The full extent of the risks, however, are unknown, as physical sex differentiation in children begins very early in pregnancy, such that the hormone would apply at a time when the child’s brain is only beginning to form. Long-term follow-up has shown that the children subjected to the hormone have impaired cognitive development.110 Moreover, while many of the genetically female children were born without virilization, the genetically male children have exhibited signs of gender atypicality, confirming suspicions that hormonal impacts in utero affected gender development in the brain.111 Despite these outcomes, only one leading hospital, Sweden’s Karolinska Institute, has formally called for the restrictive use of the drug as an experimental treatment without evidence of benefit to each individual child.112
4 Genetics: analysis, therapy and technology
p.31 Genetic testing could, in principle, also be used in pediatric care, though the prevailing view, except for matters of medical necessity, has been that predictive genetic testing should be deferred until the minor can consent. Genetic databases are being developed for a broad spectrum of conditions, both physiological and psychological. Especially for rare diseases, these resources are considered essential to understanding and improvement of care for children. The future of genetics in clinical practice, on the other hand, is difficult to foresee.121 Of considerable concern, genetic analysis is ongoing for conditions discussed elsewhere in this report, but without clear indicators of whether it will be used to further questionable interventions or to develop new and unpredictable ones on vulnerable children. 122
5. Clinical practices for children classified as minorities based on their gender, sexuality, and physical sex characteristics
p.39 Historically, biomedicine has been a powerful locus of harm for lesbian, gay, bisexual, transgender, and intersex persons. When grouped together for public discourse, these persons are often referred to as “LGBTQI persons” (with “Q” for queer or questioning), even though the interests of the individuals so classified are quite different. Individuals in the class can, however, commonly trace the harms that they have endured in biomedicine to presumptions that all persons should look, behave, and identify in ways commonly associated with being a “typical” or “normal” male or female person – one who is presumed to be heterosexual or cisgender. In the past, medical experts have played a significant role as “experts” scrutinizing the sexuality and gender of individuals to resolve disputes about the rights of those who do not conform to social norms. Worldwide, clinicians today remain primarily responsible for registering a child as male or female, with significant social and legal consequences. In the last century, they have also developed a series of invasive physical and psychological interventions in order to “normalize” people with diverse genders, sexualities, and sex characteristics, often directed at children. Many of these practices have not faded into history, whereas a lack of equal access to patient-centered care persists in Europe for minorities defined by their gender and sexuality.
This chapter attempts to address the scientific challenges associated with clinical practices that affect children on the basis of sex characteristics, sexual orientation, and gender identity. Currently, many scholars recognize the difficulty of discourse on this topic because of a history of imposing identities and classifications on individuals based on discriminatory norms. […] [T]his chapter seeks to emphasize the importance of respect for the diverse identities of the persons concerned and reflects the medical literature’s general recognition that “sex” as a classifier only relates to physiological development and characteristics associated with it – casting “male” and “female” classifications as socially defined categories that reflect “gender”. Thus, the chapter addresses the persistence of adverse care, along with the lack of access to care that is supportive and nondiscriminatory for children defined socially and medically as sexual and gender minorities.
5.2 Children with differences in sex development and intersex conditions 5.2.1 Scientific background
5.2.1 Scientific background
p.40 For the last six decades, non-consensual gender assignment surgeries and other gender- “normalizing” treatments have been performed on tens of thousands of infants and young children – most frequently, those children diagnosed as having “intersex conditions” or a “disorder of sex development”, the latter term which is increasingly described as “differences in sex development”.166 Since the 1990s, individuals who have been harmed by these practices have come forward reporting genital dysfunction, scarring, loss of sexual feeling, loss of fertility, chronic pain, and the wrong gender assignment – with irreversible excision of genital and gonadal tissues.167 Despite clinical attempts to find data supporting these practices, repeated systematic reviews of evidence have found no quality data confirming their safety and benefits for each affected child.168 Many prominent European clinicians remain among the most aggressive defenders of these practices – typically based on questionable studies tainted by views of what is best for the children and the ability of parents to “accept” a treatment recommendation, despite acknowledging the vast array of uncertainty surrounding the interventions in question.169 The affected children are diagnosed for possible intervention to “normalize” their bodies when their differences in development are considered atypical for their genetic sex, or because they were born with sex characteristics that clinicians have considered difficult to fit into medico-legal classifications of what is “male” or “female”. Many have more complex development – some with genetic markers that are neither clearly XY nor XX, while others have atypical reproductive organs or gonads. For some, their sex development also changes atypically in puberty. Other children classified as having “DSD” or “intersex” conditions have minor variations in their sex development and grow to identify as male or female, regardless of any medical intervention.170 Thus, a diversity of views has arisen as to how the bodies and identities of these children should be described as a class, which remains a source of considerable controversy.171 All of the children are grouped diagnostically based on their physical development and appearance relative to what is “typical” for medically defined “male” and “female” infants, without respect for the free development of their personalities or their future possible gender identities.
Significantly, all evidence-based reviews concur that gender identity and sexual orientation of children with differences in sex development cannot be predicted with accuracy.172 As such, the high rates of rejection of gender assignment by surgically altered children are strong indicators of how poor clinical understanding of their actual gender development is.173 Classifying these children as transgender relative to their juridical sex is problematic. Rather, their identities as male, female, a combination of both, or other identities such as “intersex” all can be consistent with some aspect of their sex development, such that their registered gender may be wrong. While most individuals affected by these gender-“normalizing” interventions appear to identify as male or female, research indicates that significant percentages are unsatisfied with their gender assignment and have a complex gender identity.174 Because gender assignment affects how one’s sexuality is viewed socially, surgical intervention may also impose a sexual classification on these children.175 Currently, the medical literature has not addressed the implications of whether clinicians and parents have a right to assign these identities surgically and irreversibly on children.
Scientific uncertainty in the advancement of treatment protocols
The history of gender-“normalizing” treatment protocols is often oversimplified, but it is critical to an understanding of the persistence of the interventions in question.176 Both in Europe and the US, the roots of surgical intervention on children derived from disagreement over what characteristics should determine a male or female assignment for a child with complex sex development. The medical literature also reveals clinical anxiety that children with atypical genital appearance would suffer stigma, social discrimination, sexual frustration, and, of most significance, rejection by their parents. It also reflects considerable hostility to perceived homosexuality in patients that clinicians believed were living in the “wrong” gender. The surgical practice had evolved from experience with patients with differences in sex development who had sought surgery consistent with their gender identity. By the 1940s, these surgeries were increasingly performed by clinicians on older children at the request of the children’s parents. In response, researchers at Johns Hopkins University performed psychological studies of patients raised without surgery in childhood, to determine whether their mental health was impaired by living with their differences. Their findings confirmed that these individuals overall showed no signs of psychological “nonhealtiness”, despite suffering stigma and social rejection.177 However, the researchers also noted that children over age three who were surgically altered at parental request showed severe signs of psychological trauma, particularly when the gender chosen by clinicians and parents was contrary to the identities that the children had begun to express. For all of these reasons, the protocols that emerged from this period determined that surgery should be done in infancy on the assumption that parental rearing could steer gender development.
The treatment protocols that emerged from the US-based recommendations were not based on any clinical trials or careful research. Rather, they had three theoretical ambitions: first, to support a preferred gender assignment, determined in part based on whether medical interventions could feasibly reconstruct a typical body for the assigned gender; second, to enable “penile-vaginal intercourse”, as the default and presumed preference for sexual activity; and third, to reduce anxiety among children about their atypical appearance, in part on the theory that such anxiety would lead to gender confusion. The emerging paradigm resulted in what is now called a “bias toward feminization”, on the assumption that children with female reproductive organs should be feminized to enable motherhood, but that “inadequate males” and children with mixed sex characteristics should be feminized if expected to suffer embarrassment as males, difficulty in urinating standing, and having penetration difficulties in sex.179 The goal of enabling “penilevaginal” intercourse has also reflected a heterosexual preference for the child sexually without regard to the child’s actual sexual orientation or desires.180
Understanding the peculiar scientific method behind these protocols is essential to understanding the persistence of the interventions in question. Until the end of the 20th century, the protocols were implemented in practice without any long-term data or follow-up confirming their safety and benefit to patients. As the first surgeon to come forward documenting gender assignment rejection by surgically altered children has explained, “Clinicians, seduced mostly through a sense of helplessness in caring for these children, unwittingly conducted what were in essence experiments, as though looking for data to fit the model”, which – once confronted with evidence of harm and significant scientific error – left practice in a state of “decision-making paralysis”, “entrenchment”, and “clinical confusion”.181 Thus, despite considerable evidence of the harms done and uncertainty in going forward, the traditional protocols have only been modified: first to use the limited medical literature and detailed genetic analysis to attempt to predict the child’s gender with more caution, and second, to attempt new surgical techniques to spare loss of sensitivity and other harms due to reconstructive and cosmetic surgeries. The most commonly referenced version of these protocols, known as the Chicago Consensus, recommended the delay of some procedures (such as vaginoplasty) but left parents to decide others.182 Audits in Europe indicate that even these recommendations may not be widely followed. 183 The European Society of Pediatric Urology has formally objected to human rights criticism and has favored continuing modified practice, conceding that delaying procedures for the child’s consent may be wise, but also making delay dependent on parents’ expectations.184 So far, only one international protocol, by the Consortium on the Management of DSD, has recognized that consent of the child is necessary to ensure that any interventions coincide with the child’s wishes. Few clinicians have publicly endorsed that protocol. No other protocol has emerged to explain, as a matter of science, how infant surgery will be certain to coincide with the child’s actual identity, sexual interests, and desires for bodily appearance.185
The current scientific evidence
Since 2006, several reviews of evidence by clinician-researchers have been conducted to determine whether gender “normalizing” treatments are safe and beneficial for children with differences in sex development and intersex conditions. The first of these reviews was conducted by a gathering of fifty of the world’s leading practitioners in Annecy, France (the Annecy Working Party), which concluded that long-term studies about the safety and efficacy of these treatments do not exist, and that even the best studies “lack the necessary detail to base further recommendations” on future care for individual children.186 Addressing the timing of gender conforming surgery in infancy, the Working Party further warned that (1) “quality of life” studies on patients into adulthood are lacking and are “poorly researched”, (2) the overall impact on the sexual function on children surgically altered is “impaired” and (3) the claim that gender development requires surgery is a “belief” unsubstantiated by data.187 A second review from the American Psychiatric Association (APA) Task Force similarly reported that the quality of evidence was so low that it was “difficult to draw conclusions sufficient for evidence-based recommendations”, describing current treatment guidelines as “uncomfortably nonspecific”.188 The most recent review, published in 2016, concluded that there is no consensus among expert practitioners as to the need, timing, safety, or efficacy of these procedures.189
Currently, all evidence-based reviews acknowledge that harms have occurred and may continue to occur for patients, including pain, dysfunction, error in gender assignment, and harm to their quality of life. On the scientific question of whether intervention is necessary, only three medical procedures have been identified as meeting that criteria in some infants: (1) administration of endocrine treatment to prevent fatal salt-loss in some infants, (2) early removal of streak gonads in children with gonadal dysgenesis, and (3) surgery in rare cases to allow exstrophic conditions in which organs protrude from the abdominal wall or impair excretion.190 Cancer risks to children with undescended testicles in most cases do not require gonad removal in infancy and can be delayed until late puberty or early adolescence in some cases, or even into adulthood. Older children with the need to menstruate may require surgical intervention to prevent vaginal pooling and other related harms, but an adolescent in such circumstances might prefer facilitation of a male gender assignment rather than vaginoplasty or may prefer temporary measures to facilitate menstruation without such procedures. None of the aforementioned reviews have identified any other procedure as medically necessary or confirmed to have a balance of long-term benefits from gender-“normalizing” interventions in infancy.
As of 2016, eight international human rights authorities – three from the United Nations191 two each from the Council of Europe192 and European Union193 and one from the Organization of American States194 – have called on all nations to either “repeal laws” that permit these procedures or “take measures” to prohibit gender-normalizing treatments that are not necessary for the physical health of the child without the child’s free and informed consent. Several UN Committees have also made specific recommendations to individual nations to stop nonconsensual procedures on intersex persons, including the Committee on the Rights of the Child (“medically unnecessary” treatments), the Committee Against Torture (“non-urgent” treatments) and the Committee on the Rights of Persons with Disabilities (“irreversible” procedures).195 As of October 2016, Austria, Denmark, France, Germany, Ireland, Italy, Switzerland, and the United Kingdom have all been specifically directed to take such actions. To date, Malta is the only European nation to do so (and without specific direction).
Though the right to consent is the touchstone of these recommendations, several other rights are clearly intended to be protected in part through consent, including: (1) the right to physical and psychological integrity, which is undermined by invasive and injurious procedures; (2) the right to private life in intimate matters and identity, which many authorities recognize as inclusive of gender and sexual identity as well as privacy regarding intimate sexual activity; (3) the right to information, both for children who may choose or refuse these treatments and their parents in managing their care; (4) the freedom from torture, inhuman and degrading treatment, including medical abuse related to all aspects of surgery, hormonal treatments, and aftercare; (5) the right to the highest attainable standard of health, which should also be paired with freedom from experimentation; as children continue to undergo unproven treatments without proof of their therapeutic character; and finally, but significantly (6) the right of the child to be heard in matters affecting the child. This last right remains the central right critical to requiring a delay of any procedures until the child can give the input necessary to ensure that the interventions match the child’s gender, sexual interests, and other wishes for their bodies. Parental consent is inherently problematic as there is no credible evidence that children benefit from improved attachment with parents who want these interventions. Indeed, parental desire for the interventions complicates the eventual transfer of control over to the children for their own gender and sexuality, which then becomes difficult for parents and clinicians who find their children’s own decisions to be unconventional.196
The current recommendations vary significantly in limiting proposed restrictions to “medically unnecessary” and “non-urgent” treatments, raising questions about how governments and health care professionals will implement them.197 Cancer risk has been used to classify undescended testicle removal as a medical necessity, but the timing of the procedure remains a problem, especially if fertility preservation options are not offered to the child. Even with the delay of the procedure until the child can fully consent, changes in health care protocols will be required, with increased monitoring and care for the child and guarantees that fertility options are preserved. Many other procedures are also rigorously defended by clinicians as highly beneficial to the health of the child and thus “necessary” for healthy functioning, such as hypospadias repair to enable “normal” urination in boys and vaginal-urethral separation in girls to prevent urinary tract infections – neither of which are supported by quality evidence of safety, benefit, or necessity and both of which risk irreversible injury. In other cases, for children whose parents have already consented to vaginoplasty, a post-operative ban on medical procedures may not cover continued parental dilation of the child’s vagina to “maintain” it if was surgically constructed before the ban. Dilation, requiring parents or clinicians using a tool or finger to penetrate the vagina on young children who cannot perform the procedure, has caused severe psychological trauma to many children who have endured repeated vaginal penetration without their consent.
The shift to respect for the right of the child to consent to any gender-related procedures will also likely require reformulations of legal rules to guarantee all rights associated with health care, bodily integrity, and gender identity. First, treatment protocols will need to be better developed to ensure access to the highest attainable standard of care for children with differences in sex development and intersex conditions who want treatments supporting them in their gender identity, even at odds with the wishes of their parents. Second, medico-legal procedures for juridical gender registration will likely require protections for children who identify as intersex or to delay registration to permit the child to choose a gender in accordance with the child’s identity. In these and other areas, the child may also require enhanced legal protections from discrimination in health care, in schools, and even, potentially, from their parents.
9. Summary and Conclusions
9.2 Rights identified
9.2.5 Protection from discrimination
P.78 Discrimination on the basis of sex and disability has surfaced in multiple interventions mentioned throughout this report, from growth suppression on girls that are “too tall”, to sex selection in ART and from interventions in utero and infancy to eliminate differences in sex development, to a long history of invasive and adverse treatments on lesbian, gay, bisexual and transgendered youth. Similar interventions have emerged for children with disabilities. The expectations raised by ART to screen out disabilities puts future children born with those disabilities at risk of stigmatization as well as parental rejection. Genetic testing to screen for disabilities may create perceptions of disability from probing the child’s genetic makeup. Children with physical disabilities also appear to be subject to surgical and hormonal interventions – to stunt their growth or even reshape them with cosmetic surgery, purportedly for their own benefit but with considerable concern that the treatment is designed with their parents’ interests in mind. The science behind many psychiatric and psychological diagnoses for children with disabilities, as well as the safety and benefit of interventions on their behalf, are not well documented. The need to reconsider whether they are forms of discrimination remains great.
9.2.6 Liberty and protection from inhumane and degrading treatment
p.79 The prohibition of torture is one of the few absolute and non-derogable human rights recognized in both regional and international human rights instruments, such as in the UN Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, Article 5 of the Universal Declaration of Human Rights, Article 7 of the International Covenant on Civil and Political Rights and Article 3 of the ECHR. The European Court of Human Rights’ case law indicates that only “severe” pain or suffering may constitute cruel and inhuman treatment, but that is not the case for degrading treatment. In the case of such treatment, the severity depends on the specific circumstances, in which special attention is given to the duration of the treatment, its physical and mental effects and, in some cases, the sex, age, and state of health of the victim.355 These considerations are relevant to health care, especially concerning treatment and handling of children, who naturally are placed in a vulnerable position. These considerations are also frequently intertwined with the liberty of the child.
Many treatments described in this report already have been criticized by human rights authorities on these grounds – including denial of palliative care and treatment for pain, involuntary hospitalization and invasive treatments for psycho-social disabilities, forced mental health therapies on children, “reparative” therapies to change gender identity and sexual orientation, and removal of genitals and gonads of children with differences in sex development and intersex conditions.356 But many others have not, such as whether governments, clinicians, and parents can force a child to endure repeated painful therapies – whether standard or innovative – or to undergo prolonged, traumatic after-care or not to be able to consent to the withdrawal of lifesustaining care. Unfortunately, as seen in the case of children with differences in sex development and intersex conditions, clinicians have not responded well to charges of torture, raising questions of whether to be effective, the right must be reformulated in a medical context, with a biomedical audience in mind.
109 Lucie Guilbaud and others, ‘In Utero Treatment of Severe Fetal Anemia Resulting from Fetomaternal Red Blood Cell Incompatibility: A Comparison of Simple Transfusion and Exchange Transfusion’ (2016) 201 European Journal of Obstetrics, Gynecology, and Reproductive Biology 85. C Garabedian and others, ‘Neonatal Outcome after Fetal Anemia Managed by Intrauterine Transfusion’ (2015) 174 European Journal of Pediatrics 1535.
110 Heino FL Meyer-Bahlburg and others, ‘Cognitive Outcome of Offspring from Dexamethasone-Treated Pregnancies at Risk for Congenital Adrenal Hyperplasia due to 21-Hydroxylase Deficiency’ (2012) 167 European Journal of Endocrinology 103. Tatja Hirvikoski and others, ‘Prenatal Dexamethasone Treatment of Children at Risk for Congenital Adrenal Hyperplasia: The Swedish Experience and Standpoint’ (2012) 97 The Journal of Clinical Endocrinology and Metabolism 1881.
111 Hirvikoski and others (n 110).
112 ibid 1882.
121 Christopher H Wade, Beth A Tarini and Benjamin S Wilfond, ‘Growing Up in the Genomic Era: Implications of WholeGenome Sequencing for Children, Families, and Pediatric Practice’ (2013) 14 Annual review of genomics and human genetics 535.
122 For differences in sex development and intersex conditions, see Valerie A Arboleda, David E Sandberg and Eric Vilain, ‘DSDs: Genetics, Underlying Pathologies and Psychosexual Differentiation’ (2014) 10 Nature Reviews Endocrinology 603. For schizophrenia, Systematic meta-analyses and field synopsis of genetic association studies in schizophrenia see Jennifer L Stone and others, ‘Rare Chromosomal Deletions and Duplicatioons Increase Risk of Schizophrenia’ (2008) 455 Nature 237. These conditions are discussed in Chapters 5.2 and 6.3, respectively.
166 Peter A Lee and others, ‘Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care’ (2016) 85 Hormone Research in Paediatrics 158.
167 See National Institutes of Health/National Institute of Diabetes and Digestive and Kidney Diseases Research (NDDKR), Strategic Plan for Pediatric Urology (2006), 53-54. Consortium on the Management of Disorders of Sexual Development, Clinical Guidelines for the Management of Disorders of Sexual Development in Childhood (2006), 28.
168 For a summary, see Lee and others (n 166).
169 P Mouriquand and others, ‘The ESPU/SPU Standpoint on the Surgical Management of Disorders of Sex Development (DSD)’ (2014) 10 Journal of Pediatric Urology 8. See also, A Binet and others, ‘Should We Question Early Feminizing Genitoplasty for Patients with Congenital Adrenal Hyperplasia and XX Karyotype?’ (2016) 51 Journal of Pediatric Surgery 465. Ricardo González and Barbara Magda Ludwikowski, ‘Should the Genitoplasty of Girls with CAH Be Done in One or Two Stages?’ (2014) 1 Frontiers in Pediatrics 1. Arianna Lesma and others, ‘Sexual Function in Adult Life Following Passerini-Glazel Feminizing Genitoplasty in Patients with Congenital Adrenal Hyperplasia’ (2014) 191 The Journal of Urology 206.
170 Indeed, the two most frequent conditions in this category include (1) hypospadias, in which the urethral opening is atypically located on the child’s penis or may be combined with other differences in sex development, and (2) various virilizing conditions in genetically female children that may result in a clitoris that is slightly to substantially larger than is typical for other female children.
171 See Tove Lundberg and others, ‘“It”s Part of Me, Not All of Me’: Young Women’s Experiences of Receiving a Diagnosis Related to Diverse Sex Development’ (2016) 29 Journal of Pediatric and Adolescent Gynecology 338. Martine Cools and others, ‘Response to the Council of Europe Human Rights Commissioner’s Issue Paper on Human Rights and Intersex People’  European urology. See also Elizabeth Reis, ‘Divergence or Disorder?: The Politics of Naming Intersex’ (2007) 50 Perspectives in Biology and Medicine 535.
172 Garland (n 6) 108, 110–112.
173 ibid 108–110, 117–121.
174 Katinka Schweizer and others, ‘Gender Experience and Satisfaction with Gender Allocation in Adults with Diverse Intersex Conditions (divergences of Sex Development, DSD)’ (2014) 5 Psychology & Sexuality 56.
175 Garland (n 37) 110–112.
176 Many European reports attribute the origin of these procedures to the US, and particularly individual clinicians, without accounting for the responsibility of their own clinicians and health systems to scientifically validate care. See ibid 51–93. For more complex accounts, see Sandra Eder, ‘From “following the push of Nature” to “restoring one’s proper sex” – cortisone and Sex at Johns Hopkins’s Pediatric Endocrinology Clinic’ (2012) 36 Endeavour 69. Elizabeth Reis, Bodies in Doubt: An American History of Intersex (Johns Hopkins University Press 2009).
177 John Money, Joan G Hampson and John L Hampson, ‘Sexual Incongruities and Psychopathology: The Evidence of Human Hermaphroditism’ (1956) 98 Bulletin of the Johns Hopkins Hospital 43. Joan G Hampson, ‘Hermaphroditic Genital Appearance, Rearing and Eroticism in Hyperadrenocorticism’ (1955) 96 Bulletin of the Johns Hopkins Hospital 265.
178 William Byne and others, ‘Report of the American Psychiatric Association Task Force on Treatment of Gender Identity Disorder’ (2012) 41 Archives of Sexual Behavior 759, 789.
179 Garland (n 6) 5–7, 94–125.
180 Byne and others (n 178) 789
181 William Reiner, ‘Prenatal Gender Imprinting and Medical Decision-Making: Genetic Male Neonates with Severely Inadequate Penises’ in Sharon Preves (ed), Ethics and Intersex (Springer 2005) 159.
182 Ieuan A Hughes and others, ‘Consensus Statement on Management of Intersex Disorders’ (2006) 2 Journal of Pediatric Urology 148, 158.
183 Garland (n 6) 9, 94–95, 110–112.
184 Pierre Mouriquand and others, ‘The ESPU/SPU Standpoint on the Surgical Management of Disorders of Sex Development (DSD)’ (2014) 10 Journal of Pediatric Urology 8.
185 Milton Diamond and Jameson Garland, ‘Evidence Regarding Cosmetic and Medically Unnecessary Surgery on Infants’ (2014) 10 Journal of Pediatric Urology 2.
186 Peter Lee and others, ‘Review of Recent Outcome Data of Disorders of Sex Development (DSD): Emphasis on Surgical and Sexual Outcomes’ (2012) 8 Journal of Pediatric Urology 611.
187 See Sarah Creighton and others, ‘Timing and Nature of Reconstructive Surgery for Disorders of Sex Development – Introduction’ (2012) 8 Journal of Pediatric Urology 602. Justine Schober and others, ‘Disorders of Sex Development: Summaries of Long-Term Outcome Studies’ (2012) 8 Journal of Pediatric Urology 616.
188 Byne and others (n 178) 789.
189 Lee and others (n 166).
190 Garland (n 6) 110–115, 269–270.
191 The UN’s High Commissioner for Human Rights, WHO, and Special Rapporteur for Torture and Degrading Treatment have all issued recommendations, see United Nations High Commissioner for Human Rights, Discrimination and violence against individuals based on their sexual orientation and gender identity (2015). WHO, Eliminating forced, coercive and otherwise involuntary sterilization: An interagency statement (May 2014). Juan E. Méndez, Report of the special rapporteur on torture and other cruel, inhuman or degrading treatment or punishment to the U.N. General Assembly, 2013 (A/HRC/22/53), paras 77, 88.
192 Council of Europe Commissioner for Human Rights, Human rights and intersex people. Issue Paper CommDH/IssuePaper (2015)1. Council of Europe Parliamentary Assembly, Resolution 1952 (2013) Children’s right to physical integrity.
193 EU Agency for Fundamental Rights, The fundamental rights situation of intersex people (2015). Council of the European Union, Guidelines to Promote and Protect the Enjoyment of All Human Rights by Lesbian, Gay, Bisexual, Transgender and Intersex (LGBTI) Persons (2013).
194 Comisión Interamericana de Derechos Humanos, Organización de los Estados Americanos, Violencia contra Personas Lesbianas, Gays, Bisexuales, Trans e Intersex en América, OAS/Ser.L/V/II.rev.1, Doc. 36 (2015).
195 Garland (n 6) 108, 110–112.
196 Justine Schober and others, ‘Disorders of Sex Development: Summaries of Long-Term Outcome Studies’ (2012) 8 Journal of Pediatric Urology 616, 617.
197 The specific language of these recommendations varies significantly relative to the medical science. The UN Special Rapporteur, for example, directed its recommendations toward “intrusive and irreversible treatments, including forced genitalnormalizing surgery, involuntary sterilization, unethical experimentation” whereas the Parliamentary Assembly of the Council of Europe focused its recommendation on “unnecessary medical or surgical treatment that is cosmetic rather than vital for health during infancy”. For a discussion of how these directives are complicated medically, see Garland (n 6) 108, 110–112.
355 Case Jalloh v. Germany, App no 54810/00 [GC], 11 July 2006, para 109.
356 Juan Méndez, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, A/HRC/22/53 (2013).
|Scientific challenge/procedure||Rights at stake|
|Gender ”normalizing” interventions on children with differences in sex development and intersex traits
Clinical practices to change gender identity or sexual orientation
|Access to care for sexual and gender minority children||
Overview of the rights at stake according to the authors.
The Rights of Children in Biomedicine: Challenges posed by scientific advances and uncertainties
Report submitted 11 January 2017
Commissioned by the Committee on Bioethics (DH-BIO) of the Council of Europe
- Kavot Zillén
- Jameson Garland,
- Santa Slokenberga