Human Rights-Based Intersex Healthcare: Using Hospital Data to Quantify Genital and Reproductive Surgery on Children in Aotearoa New Zealand

Abstract

Medical intervention in the context of variations in sex characteristics (intersex variations) has been addressed by many academic disciplines, including medical research, human rights law, and psychosocial research, but few studies bring these diverse disciplines into substantive dialogue. Recent years have seen an increase in human rights statements about the indefensibility of some surgical interventions carried out on children with variations in sex characteristics. This has prompted attempts in some jurisdictions to move towards human rights-based healthcare for people with intersex variations. Such a move will require better dialogue across legal and health-related disciplines, as well as a clearer overview of which and how many surgical interventions are at issue. The present paper initiates the dialogue across disciplines and quantifies surgical interventions carried out on the sexual and reproductive organs of minors in Aotearoa New Zealand, over a five-year period. We suggest that, for the purpose of monitoring any shift towards human rights-based healthcare, national healthcare data will need to more clearly identify diagnoses and interventions relating to minors with variations in sex characteristics.

1. Introduction

Research relating to intersex healthcare consists of discrete bodies of literature that show little dialogue between them. Medical research, human rights research, and psychosocial research all address questions about the healthcare of people with intersex characteristics, but more dialogue across this literature is required to improve healthcare. The present paper works across these bodies of literature, specifically considering medical practice in Aotearoa New Zealand. This paper is guided by three questions. (1) What understanding can be achieved by working across medical, human rights, and psychosocial literature on intersex healthcare? (2) What empirical evidence is there of surgical procedures on minors with variations in sex characteristics in Aotearoa New Zealand? (3) How might a human rights approach to the healthcare of people with variations in sex characteristics impact health service data?

2. Medical Practices and Psychosocial Critiques

People with variations in sex characteristics are diagnosed and treated with a view not only to addressing biomedical issues but also to masculinise or feminise sex anatomy. The most common surgical intervention intended to produce normative male genitalia is hypospadias surgery, and a substantial body of medical literature focuses on this surgery. Less literature focuses on feminising interventions, which can include clitoral surgery and vaginal construction and gonadectomy. We consider the literature on each of these types of surgery.

2.1. Hypospadias Surgery

Hypospadias surgery involves moving the urethral opening from the underside to the tip of the penis and is typically carried out on the healthy tissue of an infant’s penis. In a substantial percentage of cases, this surgery produces ongoing medical problems, some of which necessitate further surgery.

This surgery is driven by the belief that a child with a penis that is different from others will suffer in social situations. That is, hypospadias surgery is carried out for psychosocial reasons. Parents are required to consent to hypospadias surgery on behalf of their children, but it is not clear that the consent given is fully informed (Roen 2022). Research suggests that men who are used to living with hypospadias do not tend to seek penile surgery (Dodds et al. 2008, p. 682), and parents who initially consent to hypospadias surgery on behalf of their sons often regret that decision later (Vavilov et al. 2020).

Outcome studies suggest complication rates ranging from 10% to 54%, depending on the degree of hypospadias and the length of follow-up (Lucas et al. 2020; Pfistermuller et al. 2015; Schneuer et al. 2015). The most frequent complications include lower urinary tract symptoms (LUTS), urethral stricture, urethral fistula, meatal stenosis, and urinary tract infection (Hoy and Rourke 2016; Pfistermuller et al. 2015). Urologists specialising in this surgery raise concerns about the rate of failure and the need for repeat surgery to repair problems caused by the initial operation (Long and Canning 2016; Long et al. 2017). Some children undergo multiple repeat operations throughout their childhood for this reason. Each repeat operation carries a higher likelihood of failure than the previous operation (Snodgrass et al. 2014).

2.2. “Feminising” Interventions

Some variations in sex characteristics prompt “feminising” interventions such as clitoral reduction, vaginal construction, and gonadectomy. International research viewing long-term outcomes of this surgery often focuses on specific diagnostic groups such as CAH and AIS.

A review of surgical outcome studies reports on 29 studies (1178 patients) following genital surgery in relation to congenital adrenal hyperplasia (CAH) and identifies concerns about clitoral sensitivity, difficulties with vaginal penetration, and vaginal stenosis (Almasri et al. 2018). One concern quantified across 14 studies was vaginal stenosis (at a rate of 0.27; 95% CI 0.15 to 0.41). Another concern quantified across eight studies was urinary incontinence (at a rate of 0.04; 95% CI, 0.0 to 0.10). The three studies (combined sample size N = 102) reporting whether participants were able to have comfortable intercourse found that this was only possible for 48% of respondents. Three different studies (combined sample size N = 98) reported that almost 20% of respondents reported pain during intercourse. These are examples of the concerns about feminising genital surgery sometimes carried out on people too young to consent or understand the long-term implications of the surgery.

A study of long-term outcomes for people with AIS reported on 63 people who had undergone surgery, including 62 gonadectomies and 12 instances of vaginal surgery (Duranteau et al. 2020). A further nine had undergone vaginal dilation without surgery. Substantial numbers of participants (up to 62%) reported pain and bleeding in relation to intercourse, and this was true for those who had had vaginal interventions and for those who had not.

Table 1. Frequently reported sexual complaints.

	During Intercourse	After Intercourse
Participants who had vaginal interventions	pain: 62% bleeding: 47%	pain: 38% bleeding: 20%
Participants who did not have vaginal interventions	pain: 55%	pain: 25%

(Data from Duranteau et al. 2020).

distils data on sexual complaints most frequently reported by people with AIS.

The high rate of complaints related to vaginal surgery is reflected in other studies, too (Duranteau et al. 2020). Given this recent evidence that the available interventions do not reliably produce good outcomes for adults, it is questionable to carry out such interventions on minors.

2.3. Gonadectomy

When a person with internal gonads is found to have a Y chromosome, it was historically standard practice to remove the gonads during childhood. In the case of complete androgen insensitivity syndrome (CAIS), gonadectomy was standard practice soon after diagnosis (Deans et al. 2012), but this has changed over time. For people living as girls/women, gonadectomy was understood both to reduce cancer risk and to align the sexed anatomy with the gender identity of the person concerned. Both of these rationales for removing the gonads have come into question. Recent research documents the “negative impact of gonadectomy” in the lives of people with AIS (Duranteau et al. 2020, p. 4). Some people with relevant diagnoses (such as Androgen Insensitivity Syndrome and Swyers Syndrome) now retain their gonads, which are beneficial in terms of bone development and maintaining hormonal balance. In at least some instances, it now seems that the risk of cancer is lower than previously thought. Based on “data, and in line with demands from advocacy groups to restrict surgery… many DSD centres gradually adopted a policy of postponing prophylactic gonadectomy to late adolescence in individuals with CAIS” (Cools and Looijenga 2017, p. 176).

Giving more opportunities for young people in some centres to have a say about their healthcare has produced a generation of girls who have grown up with CAIS and, in some instances, are choosing not to undergo gonadectomy as adults (Cools and Looijenga 2017). While leading centres may have a policy of gonad retention until late adolescence, it is not clear how widespread this approach is outside leading centres.

2.4. Psychosocial Research

Psychosocial rationales are often put forward to explain surgery on the sexual and reproductive organs of children with variations in sex characteristics. There is now a growing body of psychosocial research literature highlighting the flaws in the assumption that such surgery will lead to better psychosocial outcomes for children.

Psychosocial research points to problems with the attempt to surgically “normalise” the sexed anatomy of people with variations in sex characteristics. We highlight three types of problems: (1) flawed assumptions underpinning surgery; (2) problematic communication and decision-making around the surgery; and (3) troubling outcomes from the surgery. We consider the literature addressing each of these concerns.

Surgical interventions to produce more normative-looking genitalia have long been based on psychosocial assumptions about child well-being. Assumptions revolve around heteronormative expectations (creating genitalia that will facilitate penis–vagina intercourse) and gender-specific expectations, such as the idea that a boy must be able to stand to urinate. Studies that have sought to assess the validity of assumptions about the psychosocial benefits that people experience as a result of childhood genital surgery have failed to support these assumptions (e.g., Schönbucher et al. 2008). Some have underscored approaches that avoid or work critically with these assumptions (e.g., Alderson et al. 2018; Liao 2007). It seems that the psychosocial assumptions used to justify normalising surgery during childhood are based on the personal beliefs of the adults making decisions on behalf of children, not on psychosocial research evidence.

Surgical interventions on children’s genitalia have been considered justifiable on the basis of parental consent. Researchers now bring the informed consent process into question, pointing to persistent communication difficulties that arise in the hospital setting. Psychosocial research shows that parents find hospital-based communication about their child’s variation in sex characteristics confusing (Boyse et al. 2014), fails to take their concerns into account (Chivers et al. 2017; Lundberg et al. 2017), and leaves them feeling they cannot genuinely make a decision about the proposed surgery (Freda et al. 2015). These communication issues undermine the validity of (parental) consent.

Even if valid informed parental consent was obtained and the assumptions underpinning normalising genital surgery were accurate, the troubling outcomes of surgery cannot be ignored. In addition to unintended outcomes involving surgical complications (pain, bleeding, and infection) are unintended psychosocial outcomes of surgery and the genital examinations necessitated by surgery. Over decades, intersex people have told psychologists about the inappropriate level of genital examination they experience and the distress this causes (Kessler 1998; Tosh 2020). Psychosocial research points to the stigma, shame, disempowerment, and anger that result from genital surgery and examinations (Meyer-Bahlburg et al. 2017; Sanders et al. 2017), comparing this to the psychological effects of sexual abuse (Schützmann et al. 2009; Tosh 2020). Given that genital surgery cannot be carried out without genital examinations and the likelihood of repeat surgery, the issues raised here are unlikely to be resolved in a context where childhood genital surgery continues at current levels.

3. Human Rights Literature

The heightened focus on surgeries on individuals with variations in sex characteristics in medicine and psychosocial research has led to an examination of such surgeries within human rights law. The current study builds on prior work that considers medical interventions on intersex children from human rights and ethical perspectives (Bauer et al. 2020; Carpenter 2016; Garland et al. 2021, 2022; Monro et al. 2017; Zelayandia-Gonzalez 2023).

In global terms, the right to be protected from degrading treatment (UNGA 1948, art 5; 1966a, art 7; 1984, art 16) was extended to healthcare settings when the UN Special Rapporteur Against Torture called upon states to repeal any law allowing genital-normalising surgery to be enforced or administered upon any person without their free and informed consent (UNHRC 2013). The right to health (UNGA 1948, art 25; 1966b, art 12), which includes sexual and reproductive health (WHO 2015), is also violated when states fail to take steps to prevent medically unnecessary, irreversible, and involuntary surgery and treatment (CESCR 2016). As with all human rights, these human rights are underpinned by the right to be free from discrimination (OHCHR 2021).

Articles 23 and 24 of the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) state that Indigenous people have the right to the enjoyment of the highest attainable standard of physical and mental health (UNGA 2007). The right to health is a central component of Indigenous peoples’ right to self-determination. The principle of free, prior, and informed consent, as an integral element of the right to self-determination, means that Indigenous peoples have the right to be actively involved in the development and administration of a health programme. However, Indigenous people commonly experience discrimination and interpersonal and structural racism that frequently leads to their marginalisation or exclusion (UNHCR 2016). The rights of minorities are also recognised in international law (UNGA 1966a, art 27), which has implications for Pacifica in Aotearoa New Zealand.

Within the UN Convention on the Rights of the Child 1989 (“the Convention”), the matter of unconsented surgeries on children with variations in sex characteristics is regarded as a harmful practice (CRC 2015) contravening the child’s right to be free from violence (UNCRC 2011; UNGA 1989, art 19). A children’s rights perspective requires a more nuanced approach to determinations of necessity and consent. Article 3 of the UNCRC requires that the child’s best interests are a primary consideration in a decision affecting the child. This means that an adult’s judgement of a child’s best interests cannot override the obligation to respect the child’s rights under the Convention (UNCRC 2011). The child’s best interests also means that the question of valid consent must include consideration of whether the treatment would be medically justifiable, a decision that should be made by a multidisciplinary team of professionals (UNCRC 2013). The child’s right to have their voice heard (UNGA 1989, art 12) also plays a key role, meaning that it should be presumed that a child has the capacity to form their own views and the right to express them in healthcare proceedings. The right to be heard for all children means that information about proposed treatments and their effects and likely outcomes should be provided in a child-appropriate way, with properly trained staff (CRC 2009). Article 18 of the Convention also recognises that parents are primarily responsible for the upbringing and development of their child, which provides the basis for parental authority and capacity to provide consent (that must be informed by their child’s best interests). The exercise of parental responsibility must also be considered in light of the evolving capacities of the child (UNGA 1989, art 5). Together, these provisions mean that, ultimately, the child is potentially competent to consent to medical treatment irrespective of the views of their parents (UNCRC 2003).

The Convention’s prohibition of discrimination (UNGA 1989, art 2), along with its particular recognition of the rights of Indigenous and minority children (UNGA 1989, art 30), underpins States’ obligations to effectively realise the rights of their intersex children, some of whom will experience multiple forms of discrimination. As an aspect of their right to health, Indigenous children must have access to culturally appropriate health services (UNCRC 2009). The UNDRIP also calls for particular attention to the rights and special needs of Indigenous youth and children (UNGA 2007). Similarly, the Expert Mechanism on the Rights of Indigenous Peoples has noted that the varying challenges experienced by Indigenous children may be compounded by intersecting vulnerabilities, including being intersex (UNHCR 2016; UNHRC 2021).

The human rights provisions outlined above have implications for the design and delivery of healthcare to Pacifica intersex children, though there is no clear evidence of this being taken into account in current health service delivery in Aotearoa New Zealand.

Domestic Law in Aotearoa New Zealand Echoes International Human Rights Law

Section 11 of the New Zealand Bill of Rights Act 1990 (NZBORA 1990) states that everyone has the right to refuse medical treatment. Section 19 of the Act states that everyone has the right to be free from discrimination, a right that includes the prohibition of discrimination on the grounds of sex (HRA 1993, s 21(1)(a); NZHRC 2020). The NZBORA also recognises the rights of minorities (NZBORA 1990, s 20).

The Health and Disability Commissioner Act 1994 establishes that no healthcare procedure shall be carried out without informed consent (HDCA 1994, s 20(1)(a)). The Code of Health and Disability Services Rights 1996 contains the right to be fully informed and to be able to make an informed choice and give informed consent. The provision of consent is a matter of competence to be determined by the health professional (HDC 1996). Such determinations are not age-related, with the focus being on the competence of the individual child to consent (van Rooyen et al. 2015; Wood 1998). Questions of the competency and fitness of health practitioners are governed by the Health Practitioners Competency Assurance Act 2003.

There is no legally defined age at which any person is deemed competent to consent to medical treatment. The Care of Children Act 2004 (COCA 2004) sets some parameters for such decision-making. The welfare and best interests of the child or young person are the first and paramount consideration in all decision-making affecting the child (COCA 2004, s 4), and the child must be protected from harm (COCA 2004, s 5(a)). The child must be given reasonable opportunities to express their views on any matters affecting them, and such views must be taken into account (COCA 2004, s 6). Parents have the primary responsibility for the child’s development and upbringing (COCA 2004, s 5(b)), whilst their duties, powers, rights, and responsibilities include helping the child to decide on important matters affecting them, such as non-routine medical treatment (COCA 2004, 16(1), (2)).

In Aotearoa New Zealand, there is a further bicultural dimension to the aforementioned legal and policy framework that stems from the country’s founding document, namely the Treaty of Waitangi Te Tiriti o Waitangi 1840 (Treaty of Waitangi Te Tiriti o Waitangi 1840). Current responses to intersex variations have been criticised for overlooking Indigenous cultural constructs and understandings (Kerekere 2017; Steers et al. 2021), reflecting only binary Western constructions of gender that categorise individuals as either male or female (NZHRC 2018). Similar findings have been made in relation to Pacifica (Thomsen et al. 2021).

Since the late 1990s, advocates have consistently campaigned on the human rights implications of surgery on intersex children at the international level (SOGII 2013; UNHRC 2018, 2019). At the domestic level, in 2008, the New Zealand Human Rights Commission (NZHRC) stated that intersex children should not be operated on and that an independent advocate should represent the interests of the child where delaying surgery was not possible (NZHRC 2008). It subsequently recommended the development of legislative safeguards for children in light of the right to bodily integrity and the right to refuse medical treatment contained in the New Zealand Bill of Rights Act 1990. The Commission has also called for a child-centred approach requiring a central role for young intersex people and their families/whānau in policy development, legislative changes, and medical developments (NZHRC 2016).

In effect, for most Aotearoa New Zealand children with variations in sex characteristics, the decision concerning potential medical intervention may be deferred to when the child is of sufficient age and maturity to have a well-reasoned, culturally informed view on whether or not to have that intervention.

The matter of surgery on intersex children was discussed by Aotearoa New Zealand’s delegation and the UN Committee on the Rights of the Child in 2016. The view of the delegation was that there was no legally binding system to prevent genital normalisation surgeries in children, and neither were there plans to introduce such legislation. In a follow-up to the delegation’s statement that there was no surgery related to “gender assignment” in New Zealand since 2006, the government clarified that the government had provided funding for genital normalisation surgeries outside of Aotearoa New Zealand. It was subsequently revealed that one to two operations within the country had been undertaken upon children on an annual basis (UNCRC 2016b). The CRC Committee subsequently recommended the creation of a child rights-based healthcare protocol for intersex children, and that medical and psychological professionals be trained on the range of biological and physical sexual diversity and on the consequences of unnecessary surgical and other medical interventions on intersex children (UNCRC 2016a). In response to these recommendations, as well as domestic advocacy, the Child and Youth Intersex Clinical Reference Group produced a guideline for health professionals involved immediately following the birth of a child with a genital variation (Starship 2020). Unfortunately, this guideline goes little further than encouraging health professionals to avoid stigmatising language and suggesting that surgery should not be considered as a first option. Aotearoa New Zealand has been asked to provide further information on the establishment of the rights-based healthcare protocol for intersex children, as well as data on the number of intersex children who have undergone surgery or treatment related to their sex characteristics (UNCRC 2020).

4. Empirical Study

To document any shift towards human rights-informed medical practices, it is necessary to collect data on how many surgical procedures are undertaken on minors with diagnoses related to variations in sex characteristics (diagnoses of sex development). A move towards human rights-informed healthcare should be marked by a reduction in surgery on the genital and reproductive organs of children who are too young to consent. The current study begins this process of documentation, presenting data over the 5-year period to 2019.

We report on hospital data from Aotearoa New Zealand and address two questions: (1) What surgery is carried out on the genital or reproductive organs of children and young people in Aotearoa New Zealand? (2) What are the human rights implications of this surgery for children and young people with variations in sex characteristics in Aotearoa New Zealand?

5. Methods

This study is based on aggregate hospital discharge data published online annually by New Zealand’s Ministry of Health1. These data include the annual number of diagnoses given and surgical procedures undertaken within New Zealand’s publicly funded health system, with a breakdown by age, sex, and ethnicity. We searched for diagnoses and surgical interventions that are or may be related to variations in sex characteristics. New Zealand hospital data are reported using ICD terms.

We organised and interpreted the data following four steps. First, identifying which ICD terms are most likely to relate to people with variations in sex characteristics. Second, identifying which of these were applied to minors during the five years of interest. Third, tabulating all the data for the relevant ICD terms and age groups. Fourth, clustering the ICD terms under relevant headings and producing pie charts and histograms for each cluster of interventions or diagnoses.

6. Findings

The use of ICD terms becomes problematic when interpreting the data. Hospital surgery data breaks down genital and reproductive surgery into categories that cannot simply be interpreted or mapped onto specific genital variations because the labelling makes generic reference to incision, excision, repair, or categories such as “other procedures”. The interventions indicated by these terms may or may not have been carried out on a person with a variation in sex characteristics. There are records of surgical interventions on the penis, urethra, testes, vas deferens, vagina, vulva, perineum, and clitoris of children, and these are the focus of our analysis.

Reporting all these data, with the knowledge that some of them may have no bearing on children with variations in sex characteristics, is useful at this stage because we envisage that there should be a change over time in the frequency of these interventions as health professionals in Aotearoa New Zealand shift to a human rights-based way of working. We also propose a shift in record-keeping to help monitor changes to the healthcare of people with variations in sex characteristics.

We report the analysis of hospital discharge data on diagnoses and surgical interventions under four subheadings: (i) diagnoses, (ii) hypospadias, (iii) gonadectomy, and (iv) surgery on children’s clitoris, vagina, vulva, and perineum.

6.1. Diagnoses

By far, the largest number of diagnoses falling under the umbrella of interest relate to hypospadias. More than 200 minors are diagnosed with hypospadias each year in New Zealand (with a population of just over 5 million2), while other categories likely to relate to variations in sex characteristics are far less numerous, as shown in Figure 1. Because of the way some diagnoses related to sex development are clustered and labelled and because most cases are simply documented as “other,” it is very difficult to get a clear picture of how many minors with variations in sex characteristics are diagnosed in New Zealand hospitals each year.

Figure 1 shows the 5-year sum of people aged 0–19 years who were given a range of diagnoses that could fall under the umbrella of variations in sex characteristics and be associated with surgery on genital and reproductive organs.

Public hospital data classifies most of these variations in genital or reproductive organs broadly as “congenital malformations”, thereby obscuring the many diagnostic groupings that fall under the umbrella of variations in sex characteristics. It is not possible to know how many of the minors who received these diagnoses might have undergone surgery on their genital or reproductive organs.

The diagnostic group that does appear clearly in the dataset but is not considered in Figure 1 is hypospadias.

6.2. Hypospadias

Unlike other diagnostic groups, there is clear documentation of how many surgical procedures take place each year on children diagnosed with hypospadias. Based on the number of surgical procedures documented (

Table 2. Hypospadias diagnoses and surgical procedures on minors.

	Age	2014/15	2015/16	2016/17	2017/18	2018/19
Hypospadias diagnosis	0 to 4	258	258	222	241	196
	5 to 9	20	25	12	16	13
	10 to 14	6	9	11	5	5
	15 to 19	4	2	7	3	2
	Total	288	294	252	265	216
Hypospadias surgery	0 to 4	194	200	176	175	133
	5 to 9	25	33	22	17	12
	10 to 14	8	7	13	11	3
	15 to 19	2	2	4	3	0
	Total	229	242	215	206	148

), it appears that the majority of people diagnosed with hypospadias undergo at least one surgical procedure between the ages of 0 and 4 years. As shown in Figure 2, a substantial number of these surgical procedures are carried out on Indigenous Māori and Pacifica children.

6.3. Gonadectomy

Gonadectomy may be performed for a number of reasons, including torsion of the testis, undescended testis, infection, cancer, injury, or in the context of a variation in sex characteristics such as androgen insensitivity syndrome. It is not possible to know, on the basis of publicly available data, which instances of gonadectomy relate to a variation in sex characteristics and which gonadectomies might have been delayed until the child was old enough to have a meaningful say in the decision. Figure 3 clusters together procedures that involve the removal of ovaries and/or testes. To better monitor surgical practices that impinge on the human rights of people with variations in sex characteristics, it would be necessary to maintain clearer records relating to gonadectomy, which can shed more light on the issue of necessity and consent.

6.4. Surgery on Children’s Clitoris, Vagina, Vulva, and Perineum

Over the years studied, minors in Aotearoa New Zealand underwent hundreds of operations per year on their vagina, vulva, or perineum. Public hospital discharge data classifies most of this surgery under broad categories of excision, incision, repair, and other, which gives no way of knowing which procedures are related to variations in sex characteristics and which could have been delayed until the person was old enough to consent. Given the high number of procedures and the relatively low incidence of variations that impact on vaginal anatomy, we presume that most of the procedures indicated in the data do not relate to variations of sex characteristics but are carried out for some other reason.

Figure 4 presents the total number of surgical procedures each year broken down by age and ethnicity.

Figure 5 shows the total number of procedures carried out on the “female” organs of 0–19 year olds over the 5-year period studied. This pie chart demonstrates the extremely vague terms used in the presentation of data about surgical procedures on genitalia labelled as female. Based on the terms used, it is impossible to know which interventions are carried out on children and young people with variations in sex characteristics. In order to assess whether there is any reduction in the number of feminising genital procedures on minors in Aotearoa New Zealand, the data collected would need to be coded more clearly than is currently the case.

Figure 2. Hypospadias operations on children under 10 years of age.

Figure 2. Hypospadias operations on children under 10 years of age.

Figure 3. Orchidectomy, oophorectomy, and salpingo-oophorectomy.

Figure 3. Orchidectomy, oophorectomy, and salpingo-oophorectomy.

Figure 4. Excision, incision, and repair procedures on the vagina, vulva, or perineum.

Figure 4. Excision, incision, and repair procedures on the vagina, vulva, or perineum.

Figure 5. Operations on the vagina, vulva, or perineum 2014–2019.

Figure 5. Operations on the vagina, vulva, or perineum 2014–2019.

6.5. Overview of Procedures across Age Groups

Table 3. Surgical procedures on the genital and reproductive organs of people aged 0–19 years.

Procedures	2014–2015	2015–2016	2016–2017	2017–2018	2018–2019
Hypospadias Repair	229	242	215	206	148
Orchidectomy	88	63	60	75	77
Oophorectomy3	37	37	37	45	44
Surgical Procedures on the Urethra	133	117	137	101	111
Testis, Vas Deferens, Epididymis, and Spermatic Cord Interventions	70	63	71	67	59
Surgical Procedures on the Vagina, Vulva, or Perineum	170	170	153	169	158

documents the number of surgical interventions undertaken on the genital and reproductive anatomy of people aged 0 to 19 years over the 5-year period studied. While not all of these interventions were carried out in the context of a variation in sex characteristics, it is reasonable to assume that many were.

7. Discussion

Some medical interventions carried out on children and young people with variations in sex characteristics raise human rights issues. The current analysis focuses on surgical interventions recorded in national hospital discharge data. It is important that future research address interventions that are not the focus here, including hormonal treatments, medical examinations, and other diagnostic procedures.

National hospital discharge data made publicly available in Aotearoa New Zealand documents the surgical interventions carried out on the sexual and reproductive anatomies of children and young people, including hypospadias repair, orchidectomy, oophorectomy, and surgical procedures on the urethra, vagina, and vulva. For many of these interventions, it is not possible to know (on the basis of the publicly available aggregate data) whether the intervention was carried out in the context of a variation in sex characteristics. Other reasons for some of the surgical procedures identified could include gender-affirming surgery for young trans people or repair surgery following an injury.

It is not clear from hospital discharge data which of the procedures documented would be delayed or stopped in the context of a move to human rights-informed healthcare of minors with variations in sex characteristics. There are questions to be asked about procedures occurring on younger children. What are these interventions? Could they have been delayed until the child was old enough to meaningfully consent? On what basis did the child’s caregivers consent to the surgery? More detailed data would be needed to consider any human rights implications of these procedures on the reproductive organs of minors, including a substantial minority of Indigenous Māori children, as well as Pacifica children.

7.1. Genital Surgery on Indigenous Māori and Pacifica Children

A substantial minority of the operations documented in our study are carried out on Indigenous Māori and Pacifica children. In the context of Aotearoa New Zealand, where Te Tiriti o Waitangi sets out binding agreements about the obligations of the State to protect and promote the well-being of Māori people, this should mean that Indigenous communities are consulted and Indigenous health principles are applied to the healthcare of these children. There is no evidence of this occurring, and we have not been able to find documentation of Indigenous perspectives being sought or expressed in relation to the specific kinds of surgery considered in this paper. Given the long-standing failure to adequately serve Indigenous populations in mainstream health services, it seems unlikely that all caregivers responsible for Indigenous children give genuinely informed consent for the surgical interventions that these children undergo.

The obligation to recognise the rights of minorities in domestic (NZBORA 1990, s 20) and international law (UNGA 1966a, art 27; 1989, art 30) has implications for the design and delivery of healthcare to Pacifica children; again, there is no evidence of this occurring.

The UNCRC 1989 stipulates that Indigenous children must have access to culturally appropriate health services (UNCRC 2009), and the UNDRIP 2007 underscores the rights of Indigenous people in relation to health. Taking a human rights-based approach to the healthcare of children and young people with variations in sex characteristics would, therefore, mean establishing what constitutes culturally appropriate responses to intersex bodies. Given that Māori and Pacifica models of health emphasise a holistic perspective, not a medicalising or compartmentalising approach, it seems likely that intersex advocates’ calls for respecting bodily integrity (Black et al. 2017) could sit well with Māori models (Durie 1985, 1999), and Pacifica models (Kapeli 2021) of health. It is time for work to be done on articulating Māori and Pacifica approaches to intersex health and well-being (Roen and Oliver 2022) and for those understandings to contribute to healthcare practices.

7.2. Penile, Vaginal and Vulval Surgery

In Aotearoa New Zealand, an average of 175 surgical procedures are carried out per year on children aged 0 to 4 in relation to hypospadias. The United Nations Committee on the Rights of the Child has recommended that non-essential surgical procedures on the genitalia of infants and children too young to consent in Aotearoa New Zealand do not continue (UNCRC 2016a). Discontinuing hypospadias surgery, in most or all cases, should, therefore, be a priority for shifting to a human rights-based healthcare approach for children with variations in sex characteristics. Hypospadias surgery is questionable from a human rights perspective because hypospadias surgery is not biomedically necessary. Rather, it tends to be undertaken for psychosocial reasons that are increasingly being challenged. Hypospadias surgery can necessitate subsequent surgeries to correct problematic surgical outcomes. Evidence of parental regret (Vavilov et al. 2020) and the lived experience of adults with hypospadias raises questions about consent, which has legal implications. A human rights-based approach would mean delaying surgical intervention at least until the person concerned can meaningfully consent to the surgery or freely opt not to have surgery.

The long-term effects of vaginal and vulval surgery impact the person’s sexual experience in ways that cannot necessarily be taken into account by health professionals and caregivers deciding to go ahead with surgery on children. For decades, intersex people have raised concerns about this kind of surgery (e.g., Chase 1998; Holmes 2002a, 2002b), and so have health professionals (e.g., Creighton and Minto 2001; Crouch et al. 2008; Minto et al. 2001). Recent clinical research echoes these concerns (Almasri et al. 2018; Duranteau et al. 2020). Given that feminising genitoplasty is typically carried out for psychosocial reasons (founded on the popular beliefs that a girl must grow up with typical-looking genitalia and that all females want to participate in penis–vagina intercourse) and not on biomedical grounds, these surgical interventions can be delayed until the person concerned is old enough to decide for themselves whether or not they want surgery. In cases where menstruation might be obstructed prior to surgery, this can be managed through medication until surgery occurs.

Medical evidence cataloguing high levels of poor outcomes with feminising genitoplasty ought to prompt more data collection on this type of surgery on children with genital variations; the failure to do so raises questions around the extent to which the human rights (NZBORA 1990, s 11; UNGA 1989, art.s 19, 24) of children with vaginal variations are protected in Aotearoa New Zealand. The challenge ahead is to establish a nonsurgical healthcare pathway that includes enough support for affected whānau/families to raise a child with genital variation and enough support for children and young people so they can genuinely be involved in a consent process if, one day, surgery becomes a possibility for them.

7.3. Prophylactic Gonadectomy

The question of gonadectomy on minors with variations in sex characteristics is more complicated than the other surgical interventions considered here. Some gonadectomy, for some diagnostic groups and age groups, is medically necessary and can be lifesaving. The complicated questions relate to which groups, at which ages, and based on what information. Here, we set out some key understandings from recent clinical research with a view to informing a human rights-based approach to gonadectomy.

Gonadectomy impinges on fertility, hormone production, and bone health and is, therefore, of particular concern (Weidler et al. 2019). Living without gonads necessitates hormone replacement therapy, which can be hard to manage, potentially leading to years of debilitating problems. The dilemma faced by clinicians and by people who agree to this surgery (for themselves or on behalf of their children) is that it may not be easy to weigh the health risks associated with gonadectomy against the cancer risks associated with some internal gonads. This dilemma is twofold: first, new research continues to emerge informing the assessment of cancer risk, and second, the very mention of cancer can be so emotive that it may be difficult for caregivers to accurately assess risk. In some instances when gonads are removed, parents are unaware of the choices open to them (such as retaining the gonads until at least after puberty), and parents and young people do not have access to good data about the actual level of risk of malignancy given their specific circumstances.4

A gonad-sparing approach is now taken in some centres internationally, based on low malignancy rates during childhood, depending on diagnosis (Steinmacher et al. 2021). This gonad-sparing approach involves an assessment of tumour risk based on molecular diagnosis, but the difficulty of rolling out this approach more widely is that most patients do not have a molecular diagnosis (Steinmacher et al. 2021). Some clinician–researchers have proposed a biannual screening program for women who choose to retain their gonads into adulthood (Döhnert et al. 2017), and some have set out a protocol for gonad preservation based on the principle of shared decision-making and watchful waiting (Weidler et al. 2019). While “testicular germ cell tumours are increasingly believed to be quite rare with rates as low as 0% in molecularly confirmed individuals with AIS” (Weidler et al. 2019, p. 605), there is currently no way of reliably detecting the development of malignancy (Cools and Looijenga 2017; Weidler et al. 2019).

For variations in sex characteristics where gonadectomy might once have been routine, human rights-based healthcare would involve taking a gonad-sparing approach whenever possible. The latest research suggests that decisions should be informed by molecular diagnostic tools and the principle of shared decision-making. This area of intersex healthcare is changing at some pace as new technologies become available to identify cases where gonadectomy is necessary for saving life and to distinguish those from cases where gonadectomy impinges on the rights of a minor. A greater understanding of the medical risks and health benefits of delaying gonadectomies in children should presumably lead to a downward trend in gonadectomies, but the variability of the data across the years suggests either that instances of gonadectomies remain the same despite the changing knowledge or current data reporting fails to discern progress that is being made. Either way, the data raise questions for the right to health, which requires States to provide trained and skilled health personnel who can perform a full range of sexual and reproductive healthcare services as well as scientific and medically appropriate and up-to-date evidence-based information (CESCR 2000, 2016).

8. Conclusions

This paper highlights the disjuncture between medical practice and human rights principles. Concerns about a range of surgical interventions on children with variations in sex characteristics are articulated in medical literature, pointing to problematic surgical outcomes and the likelihood of parental regret. Psychosocial research points to communication and decision-making problems that bring the consent process into question and highlights long-term psychosocial distress resulting from clinical intervention. Human rights literature states that some surgical interventions on the genital and reproductive organs of minors are indefensible in relation to international human rights agreements and domestic human rights and healthcare legislation in Aotearoa New Zealand. The present data show clearly that surgery continues on minors with variations in sex characteristics in Aotearoa New Zealand.

Our research raises questions about the statement of the Aotearoa New Zealand delegation to the UN Committee on the Rights of the Child that no surgery relating to gender assignment had taken place in Aotearoa New Zealand from 2006, and the subsequent revelation that, annually, one to two surgeries had taken place upon children with variations of sex characteristics in Aotearoa New Zealand (UNCRC 2016b).

If Aotearoa New Zealand is to meet its legal obligations then many of the surgical interventions addressed in this paper must be brought into question. If a human rights-based approach to intersex healthcare is implemented in Aotearoa New Zealand, we would expect to see three key changes: (1) a reduction in the number of surgical operations performed on the genital and reproductive organs of minors in New Zealand’s public hospitals; (2) procedures for documenting medical diagnoses and interventions on children with variations in sex characteristics more clearly than is currently the case; and (3) the development and implementation of a nonsurgical and culturally meaningful alternative care pathway.