Introduction

Terms such as intersex, disorders or differences of sex development and diverse sex development (DSD)1 are used to refer to a group of genetic conditions where the combination of chromosomal, gonadal and genital sex characteristics does not map clearly onto the social categories of female or male. Some DSD conditions are associated with so-called ambiguous genitalia, such as when the clitoris–penis is deemed too large or too small, depending on the gender assigned to the child.

Gender assignment in these scenarios is complex and taxing. It takes account of the (preferably genetic) diagnosis, reproductive and sex anatomy, surgical options, fertility potential, exposure to prenatal androgens and parental preferences.2 3 From the late 1950s, in an era when the clitoris was not labelled as part of the human body in editions of Grey’s Anatomy, removal of all or part of the clitoris became a standard intervention for female-assigned children with ambiguous genitalia. Techniques have evolved from clitoredectomy (amputation of the clitoris) to clitoral recession (pleating together the erectile tissue to shorten the clitoris) and clitoral reduction (removal of the erectile tissue while attempting to preserve the nerve and blood vessels).4

Infants and children cannot consent to surgery. Parental consent is usually predicated on the assumption that surgery will stabilise gender identity, prevent any negative psychosocial consequences of growing up with a larger clitoris and offer the adult normality in sexuality and relationships.5–8

Thus far, providers of childhood feminising genital surgery have reported only short-term outcomes and not the intended lifelong benefits.9 Attempts to review surgical outcomes are limited by small sample sizes, diverse surgical techniques and high attrition rates. Surgical evidence is further limited by the subjective nature of any evaluation of genital appearance. Without longitudinal evidence, it remains a leap of faith to extrapolate from childhood outcomes that satisfy paediatricians to outcomes that satisfy the postpubertal, sexually active adults who underwent childhood clitoral surgery.

In a landmark report based on 44 women who had undergone a ‘one-stage’ childhood feminising genitoplasty, almost all of the participants had already undergone multiple genital operations and were still in need of further surgery.10 Subsequent research has identified an association between clitoral surgery and inorgasmia11 and loss of clitoral sensitivity.12 In the most recent study of its kind, many adults expressed dissatisfaction with outcomes of their childhood surgery.13 These reports suggest that clitoral surgery is not achieving the intended long-term psychosocial and psychosexual goals. Furthermore, trauma and shame from multiple genital examinations and operations are a key theme in survivor stories.14

The 2006 Consensus Statement on Management of Intersex Disorders acknowledged that surgery can harm and that risks of no surgery, which vary by condition, had been overstated.2 For example, the consensus statement clarified that medical knowledge provided only limited insight into gender identity development and that there was no evidence that surgery benefitted family relationships. Experts recommended that clitoral surgery be limited to cases of ‘severe virilisation’, a restriction subsequently challenged by paediatric surgeons confident in their ability to overcome the identified problems with new operative techniques.15 16 In a project aimed to estimate the impact of the consensus statement, half of the participating European DSD teams self-reported a reduction in clitoral surgery.17 However, actual National Health Service data in the UK indicated that the prevalence of clitoral surgery had not changed.4 In a recent multicentre study in the USA with parents of female-assigned and male-assigned children with genital differences, almost all of the parents in the study sample opted for their child to have genitopasty.18

Meanwhile, intersex activists have made significant advances in positioning childhood surgery as a human rights violation.19 In 2013, the Council of Europe called on its member states to ’ensure that no-one is subjected to unnecessary medical or surgical treatment that is cosmetic rather than vital for health during infancy or childhood’.20 In the same year, the UN Special Rapporteur on Torture called on nation states to repeal laws allowing ‘forced gender-normalising surgeries'.21 From April 2015, parents in Malta may consent to ‘any sex assignment treatment and/or surgical intervention on the sex characteristics of a minor’ only in ‘exceptional circumstances’ and must not be ‘driven by social factors’.22 In the same year, the European Union Fundamental Rights Agency recommended that member states ‘avoid non-consensual sex normalising medical treatments on intersex people'.23 These developments follow ongoing critiques of medical intervention on intersex bodies published in academic social science literature, summarised in a recent review.24

Normalising clitoral surgery on minors is contentious, and health professionals (HPs) have the difficult task of helping parents decide. The current study asks: how do HPs specialising in this work currently negotiate the dilemmas surrounding clitoral surgery on minors?

Methods

The current study is part of a larger project that involved talking to clinicians, affected young people, parents and general population samples about variations in sex development in Scotland, England, Norway and Sweden (SENS). The SENS project includes the largest interview study of European DSD professionals to date. It draws from critical psychological theory and focuses on how participants make sense of clinical practice.

The current study is based on qualitative semistructured interviews with HPs who were sampled internationally to provide a large enough group to offer anonymity. The 32 participants were recruited via email invitation from 12 hospitals in Britain and Sweden. They were recruited to the study via purposive snowball sampling.25 All were members of or affiliated to multidisciplinary teams for children, adolescents and adults with DSD. Most were highly clinically experienced in this field and many were also research active. They were: 13 surgical specialists (gynaecologists, urologists and paediatric surgeons), 9 non-surgical specialists (endocrinologists and geneticists), 7 psychologists and 3 nurse specialists. All gave fully informed written consent to participate.

An academic psychologist (last author) not involved in care provision and not known to most of the participants carried out the semistructured interviews, which were guided by open questions (as shown in online supplementary file 1) that addressed clitoral surgery specifically, as well as other surgical, hormonal and psychological interventions in relation to sex development. The interviews were audio-recorded and transcribed verbatim by a professional transcriber and have been anonymised and stored securely in accordance with ethical requirements. Numbers in brackets (preceded by P) in the Results section refer to the participants’ anonymisation code. Unpublished data are not available to anyone outside the research team due to the sensitivity of the transcripts.

The data have been analysed using theoretical thematic analysis.26 First, the transcripts were coded according to types of clinical intervention and professional roles. Then, data coded as focusing on clitoral enlargement and clitoral surgery underwent further analysis. Existing literature was consulted to identify themes that resonated with the present analysis, and theoretical understandings from critical psychology were drawn on to inform the analysis and interpretation. The themes that emerged out of this analysis centre on how HPs manage the issue of clitoral surgery.

Results

The interviewees consistently referred to clitoral surgery as ‘the big debate’ or ‘one big grey area’. All of those who mentioned the stance taken by their team claimed a ‘conservative’ approach (P15) and described themselves and their colleagues as ‘a lot more restrictive’ (P22), being ‘quite hands off’ (P21) and ‘much happier to not perform surgery’ (P32). The consistency suggests a dynamic of pluralistic ignorance; all teams articulated reasons to reject the incumbent norm of continuing the practice of clitoral surgery but, in the absence of clear data on rates of surgery, they believed that other teams were more in favour of it than themselves. Our analysis suggests that the HPs managed the conflicting views on surgery by deploying four overlapping strategies: (1) engaging with new thinking, (2) holding on to historical assumptions, (3) reducing the burden of dilemma and (4) being flexible. These strategies are discussed in the context of relevant literatures.

Discussion

This study shows how HPs specialising in DSD may understand childhood clitoral surgery as controversial yet fall back on spurious claims about intended but unevidenced psychosocial benefits of such surgery. It appears that some HPs forget that clitoral surgery is not done for medical reasons, and many consider that poor outcomes are produced ‘elsewhere.’ These findings have significant implications for how HPs talk with parents about clitoral size and how they conceptualise care plans.

The research participants might have felt under pressure to position themselves as HPs who interrogate childhood genital surgery. Therefore, there may have been some selection bias in that only those HPs who questioned elective medical interventions came forward to be interviewed. With this limitation in mind, these HPs understood clitoral surgery on minors to be controversial. This potentially reflects the cultural context in the UK and Scandinavia and may not be generalisable to other locations globally. While a number of strategies for managing the dilemmas could be identified in the interview transcripts, these were often contradictory and could compound HPs’ difficulties and confuse families.

Given the historical and ongoing debates about clitoral surgery, the lack of coherence is understandable. Childhood surgery has been standard practice for decades, leaving little scope for comparative research. It is uncertain to what extent the difficulties highlighted by empirical research and survivor stories10–14 are influenced by the imperfect results of surgery, other aspects of DSD conditions, poor psychological care, diminished family functioning or a combination of these and perhaps some other factors. HPs advise parents on clitoral surgery under conditions of uncertainty, with no more to guide them than a patchy and rapidly changing surgical literature, survivor stories in the grey literature, human rights challenges, and their personal values and assumptions about the gendered contexts in which children develop. Future research with families who decline clitoral surgery for their child may provide more insight about how the parents or surrogates talk about bodies and bodily differences with their children. This type of research can be helpful for HPs and for parents who have to make difficult decisions for the child.

Our interviewees struggled to reconcile their new knowledge with the incumbent norm-based assumptions. They were clear about the non-linear relationship between anatomy and psychology; they knew that clitoris size did not always predict the scale of individuals’ reactions or their wishes regarding surgery. They were simultaneously surprised and even shocked by the unproblematic reactions of those parents and patients who were ‘not bothered’ by a larger clitoris. A psychologist, for example, described a mother who felt no stigmatisation at all about her daughter’s clitoral difference and who apparently said, ’My little daughter can run around naked … [on the beach] with her big clitoris, I don’t mind and no one else should mind either…' (P37). Even so, the psychologist described the mother’s tacit acceptance as ‘extreme’ and lamented that clitoral enlargement could only be tolerated ‘in another world.’

Parents and patients opting out of clitoral surgery do not live in another world but the current one, where clinical specialists and care advocates have already produced detailed guides for talking to parents about their child with genital variations without relying on medical framing.29 Mention of active use of these resources was absent, even though they offer a more helpful language with which to create non-surgical care pathways. Until other expertly and confidently formulated care options become available, many parents do not have a genuine choice.39 Surgery may be a high-risk strategy involving multiple hospital visits, regular anatomical inspections and repeat genital operations, but it remains compelling so long as it is the only established treatment pathway. According to the current transcripts, it is the only one articulated.

Ethically and psychosocially informed alternatives require HPs to question the norm-based assumptions, whose salience in the present data begs explaining. DSD care has historically been located in acute medicine, where the dimorphic language of normality and abnormality is integral to a curative model. Such a care model may render normalising interventions inevitable. The acute medical culture may therefore not be the most adept at approaching medically benign genital variations or at fostering the use of richer, more inclusive language29 with which to talk and think about diversity of genital anatomy and function.

Wherever DSD care is located in future, the social motivation that underpins clitoral surgery renders two questions inevitable. First, does surgery deliver the projected long-term psychosocial outcomes? Second, is there a less invasive, lower risk and more reversible way than surgery to realise the same outcomes? Instead of being saddled by the first, more familiar question, today’s clinicians could switch to the second question. If its answer is ‘yes’, then the first question is superfluous.

Conclusion

HPs engaged with new knowledge that questioned childhood clitoral surgery but also recycled familiar assumptions that used to be accepted as the rationale for surgery. Their struggles to integrate the conflicting ideas were reflected in the contradictory ways of talking about clitoral surgery and a lack of reference to other care options. The current findings point to a risk of DSD experts working in a silo, unaware of social changes that are afoot, even as some patients and families are beginning to report unproblematic reactions to clitoral differences. In order to translate their broad wish to limit the practice of clitoral surgery, HPs will need to question social norms in the same way that some service users already do. This means adopting a more inclusive language to talk and think about genital differences and formulating alternative interventions to address the psychosocial concerns that surgery is purported to address.