Fixing bodies and shaping narratives: Epistemic injustice and the responses of medicine and bioethics to intersex human rights demands

Abstract

Children with innate variations of sex characteristics (also termed differences of sex development or intersex traits) are routinely subjected to medical interventions that aim to make their bodies appear or function more typically female or male. Many such interventions lack clear evidence of benefit, they have been challenged for thirty years, and they are now understood to violate children’s rights to bodily autonomy and bodily integrity. In this paper I argue that these persist in part due to epistemic injustices and biomedical authority. Epistemic injustices include limited disclosure of current practices, the systemic marginalisation of community voices and psychosocial professionals, and attempts to discredit or misrepresent testimony. Bioethics has largely failed to change medical practice, and sometimes plays a role in perpetuating epistemic injustices. I find that the development of an intersex movement provides opportunities for epistemic justice and liberation by engaging with other disciplines and promoting oversight of medical decision-making. The paper draws particularly on Australian sources, including internationally influential ethical principles.

Introduction

People with innate variations of sex characteristics – also termed intersex traits or variations, or disorders or differences of sex development (DSD) – comprise a heterogeneous population, and these umbrella terms refer to a set of diagnoses with contested borders. Some experiences are specific to particular diagnoses, but many are shared across the broader population. These include infertility or impaired fertility, and experiences of medical interventions, stigmatisation and shaming that arise from responses to sex characteristics and sex development that differ from medical norms for female or male bodies. Some current medical practices are understood by international and national human rights institutions to violate children's rights, including medical interventions not based on urgent physical need or personal informed consent, such as surgical and hormonal interventions that have a basis in gender stereotypes, cultural norms, or beliefs about future risks of stigmatisation.^1,8 Common associated experiences in medical settings include trauma and impairments due to medical interventions, the provision of inadequate and motivated information about bodies, a lack of data on long-term outcomes and adult health, and the cost of access to ongoing and reparative treatment.^1,6,9,10

Stigmatisation and unnecessary medical interventions have been challenged by the intersex movement since at least the early 1990s. Attempts to reform clinical practices seek to distinguish interventions associated with urgent physical health issues or personal informed consent from medical interventions intended to make bodies more closely fit clinical norms for appearance and function. These demands were first articulated in the work of the Intersex Society of North America:

Intersex children would be given preliminary gender assignments as boys and girls (recognizing that all gender assignment is preliminary and does not require surgery); hormonal and surgical interventions would be limited to those that were needed to treat clear and present medical problems, with all elective interventions waiting until patients could consent for themselves; intersex children and adults (and their loved ones) would be provided professional, non-shaming psychosocial support and peer support. ^11,12

Substantively the same demands remain evident in the declaration of an international forum in Malta. ¹³ They are elaborated in detail in the 2017 Darlington Statement in Australia and Aotearoa New Zealand, which calls for initial female or male assignment, prohibition of medically ‘deferrable’ surgical and hormonal interventions ‘that alter the sex characteristics of infants and children without personal consent’, access to ‘funded counselling and peer support’, and recognition of a diversity of adult identities such that ‘sex/gender assignments must be regarded as provisional’. ¹⁴ In an acknowledgement of uncertainty about deferability in some scenarios, the Statement calls for independent human rights-affirming oversight of contested procedures. It also deploys a new neutral terminology of ‘variations of sex characteristics’. Clinics have been resistant to these demands. Despite the longevity of these demands and discussion between clinicians and community, and increasing attention by human rights and legislative bodies, attempts to reform clinical practice show little evidence of change.

In this paper, I use Miranda Fricker's concept of epistemic injustice to conceptualise injustices faced by people with intersex variations in the face of powerful contradictory interests and beliefs, and to identify how the epistemic authority of biomedical clinicians has been deployed to unjustly impact the self-understanding and testimonial credibility of people with lived experience and other professionals. I show this to have occurred through unsubstantiated and often unverifiable rhetoric of change, marginalisation of community and psychosocial perspectives, misrepresentation of community and institutional testimony, and non-disclosure and forms of disclosure that are motivated to produce specific treatment decisions. I also find that conceptions of epistemic justice provide opportunities to explain the role and goals of the intersex human rights movement. In this paper, I draw particularly on Australian resources, including ethical principles that are internationally influential.

Epistemic injustice

Fricker coined the term ‘epistemic injustice’ to describe a class of wrongs where individuals are ‘downgraded and/or disadvantaged in respect of their status as an epistemic subject’, an injustice to their capacity as a knower that is prejudicial, and ‘fundamentally a form of (direct or indirect) discrimination’. ¹⁵ Testimonial injustice arises when the credibility of a speaker is unduly diminished because of the speaker's characteristics. Hermeneutical injustice occurs when an individual has no access to concepts and terms that can describe their experience ¹⁶ ; it arises in gaps in understanding created by non-disclosure, and social stereotypes shaped by agendas from elsewhere. These include conceptions of intersex advocacy as relating to the needs of an identity group, and the disadvantage faced by a speaker belonging to a social group perceived as incomprehensible or disgruntled. They have implications for the ways in which people with innate variations of sex characteristics are treated by medicine and bioethics.

Ian James Kidd and Havi Carel have identified that people put in the position of patients ‘are particularly vulnerable to epistemic injustice’. ¹⁷ These arise from asymmetries, biomedical approaches and medical authority such that:

judgments about the epistemic credibility of ill persons are too often prejudicial and generated and sustained by negative stereotypes and structural features of healthcare practice’ with ‘little room for personal needs and values’. ¹⁸

Stereotypes and credibility deficits can have an inhibiting effect on the formation of self, giving rise to a particular set of testimonial injustices. Incomprehension and self-doubt can prevent individuals from becoming recognised as epistemic agents, even to themselves. On Fricker's account, prejudicial stereotypes ‘inhibit the very formation of self’. ¹⁶ They have a profound impact on how people come to a place of self-understanding, with ‘a powerful effect on people's performances’. ¹⁶

Kristie Dotson expands concepts of epistemic injustice to identify how contributory injustice and wilful ignorance arise when alternative epistemic resources are perceived by those in positions of epistemic credibility, but disregarded. ¹⁹ Dotson states that wilful hermeneutical ignorance can be seen in ‘maintaining and utilising structurally prejudiced hermeneutical resources that result in epistemic harm’ and impaired agency. ¹⁹ Following Charles Mills, Gaile Pohlhaus asserts that communities ‘that have historically been harmed in the past by specific epistemic institutions may understandably be less trusting of them’. ²⁰

Nomenclature

Questions of definitions and terms used to describe people with intersex variations are contested, as they likely are all for all stigmatised populations. As Morgan Holmes puts it, the population is historically contingent and subject to the demands of other agendas: intersex ‘is not one but many sites of contested being’; it is ‘a sign constantly under erasure, whose significance always carries the trace of an agenda from somewhere else’. ²¹

Different terms have become associated with different values and beliefs about the meaning and even scope of the population.^22,25 As a result, exclusive use of specific terminology in many settings can provide only partial and distorted representations of the population, and poor resources for self-understanding. The resulting hermeneutical injustices have material effects where, for example, the use of ‘disorders of sex development’ terminology in clinical settings, and the term ‘intersex’ in community, human rights and LGBTQ spaces has sometimes led to the construction of incommensurate and contradictory policy frameworks, as if referring to distinct populations. ²⁵

Originally a clinical term, ‘intersex’ was adopted by the first self-organised communities of people with innate variations of sex characteristics in the 1990s. While the pursuit of human rights demands, community development, and institution building have been ongoing tasks, often on a shoestring, intersex communities are typically open to people who experience or risk stigmatisation and harm because of their innate sex characteristics, and their families, and are not limited to people with specific identities. Some are for people with specific diagnoses. Often the work of the intersex movement has taken place alongside adjacent liberation movements, including the LGBTQ movement.

In traditional Christian and Islamic jurisprudence, people with intersex traits were referred to as ‘hermaphrodites’ or through use of analogous terms, but authority to determine sex in situations of doubt passed to medicine in a process accompanied by scientific inquiry, scientific racism, and moral panics.^26,27 A clinical shift in this century, from the traditional term ‘hermaphrodite’ to ‘disorders of sex development’, was framed as a way of escaping pejorative and old-fashioned beliefs. ²⁸ Around the same time, the term intersex was abandoned in clinical settings, with the stated intention to distinguish questions of ‘identity’ from clinical disorders and head off reinterpretations of the meaning of variations of sex characteristics in the context of LGBTQ activism.^28,29

However, nomenclature shifts in clinical settings have not addressed the substance behind those beliefs; that is, they have not addressed underlying clinical and social misconceptions, stigmatisation, and harm. Indeed, harmful preconceptions that intertwine ideas about bodies and identities remain evident, including in clinical settings.^25,29 Illustrations of these preconceptions include the ahistorical proposition in a sports medicine statement that the existence of ‘DSD women’ demonstrates ‘the new realm of gender fluidity’. ³⁰ An intertwining of bodies and identities is also evident in beliefs that surgery assigns gender, and, as Katrina Karkazis and I assert, in construction of an unwanted third sex category in sport as a form of punishment for elite women athletes with intersex traits who resist the medicalisation of their bodies. ³¹

The identities, values, and preferences of people with intersex traits are heterogeneous. Non-binary sex and gender categories have been recognised in Australia since at least 2003 and are preferred by some people with intersex traits. ³² Indeed, people with intersex traits may grow up to express LGBTQ or cisgender heterosexual identities. However, simplistic social conceptions of the intersex population as an identity group, and legal conceptions of intersex as a third sex category, each fail to respect this heterogeneity. Such conceptions also erect barriers for people who share the same kinds of biological characteristics and risks or experiences of stigma but who do not share any identity or preference for legal categorisation. Such conceptions are also resisted because reforms to protect people with marginalised identities do not protect people with marginalised physical characteristics. ²⁴ These factors mean that conceptions of intersex people as a third sex or an identity group are opposed in intersex community declarations like the Darlington Statement. ¹⁴

This paper primarily uses the terms ‘intersex movement’, ‘innate variations of sex characteristics’ and ‘intersex traits’, reflecting a view that the term DSD was intended to wrest epistemic authority back from the nascent intersex movement. Morgan Holmes has written how ‘silencing is precisely the point of the new terminology’, a testimonial injustice re-entrenching ‘clinical power to delineate and silence those marked by the diagnosis’. ³³

This terminology has naturalised medical framings of intersex, and so its clinical adoption speaks to its utility in placing medical authority beyond question. For this reason, it is resisted.

Appeals to authority and rhetoric of change

Biomedical authorities often claim that clinical practices have changed or improved over time. As I will show, such claims are typically imprecise and unevidenced or unverifiable, while evidence continues to come to light of unchanged practices of concern.

In response to the first flowering of the intersex movement in the 1990s, clinical unease with a poor evidence base and demands for reform led to the convening of an invite-only 2005 clinical workshop where the two community representatives reported their marginalisation.^32,35 The workshop led to a statement in 2006 that called for a change to nomenclature, and some shifts in practices around sex assignment and disclosure. It detailed the (scarce) evidence base for gonadectomies and the absence of ‘systematic’ evidence to support feminising surgeries, and suggested delays to early vaginoplasties.^36,37 For example, the summary statement identifies that:

It is generally felt that surgery that is carried out for cosmetic reasons in the first year of life relieves parental distress and improves attachment between the child and the parents. The systematic evidence for this belief is lacking ³⁷

The statement nevertheless facilitated irreversible medical interventions on children due to parental distress, left much scope for individual clinical judgement, and made few tangible commitments.^11,32,38 Mention of peer support was consigned to an appendix.

A decade later, evidence remained scarce and clinical consensus was lacking on key aspects of medical interventions. A 2016 global clinical consensus reports:

There is still no consensual attitude regarding indications, timing, procedure and evaluation of outcome of DSD surgery. The levels of evidence of responses given by the experts are low […] Timing, choice of the individual and irreversibility of surgical procedures are sources of concerns. There is no evidence regarding the impact of surgically treated or non-treated DSDs during childhood for the individual, the parents, society or the risk of stigmatization. ³⁹

There is little evidence for change to clinical practice arising from the 2006 statement. A 2013 submission by an Australian organisation of paediatric endocrinologists summarised change as:

a trend toward consideration of less genital and gonadal surgery in infants assigned female, or delaying surgery. It is important to note that current practice has changed significantly from the past. ⁴⁰

A trend towards consideration of something might seem reassuring, but it is merely suggestive of change. The same clinical organisation makes essentially the same argument today, in a bland acknowledgement ‘that some past clinical interventions led to harm’ and a commitment to ‘working with all stakeholders to achieve optimal outcomes in future’. ⁴¹

It remains unclear what practices might have changed, and what new practices might have replaced them. There is no certainty about the nature of optimal outcomes, or who might define them. Such statements give the impression that concerns regarding medical practice are being addressed while providing no benchmarks or mechanisms to hold institutions or clinicians to account.

While past practices and how they might have changed are not elaborated, the 2013 Australian clinical submission detailed current practices including:

surgery for the purpose of appearance including reduction of an enlarged clitoris or repair or construction of a urinary outlet to the end of the penis […] … for functional reasons such as to allow a male individual to urinate while standing, and for psychosocial reasons such as to allow the child to develop without the psychosocial stigma or distress which is associated with having genitalia incongruous with the sex of rearing. ⁴⁰

Surgery to enable a boy to stand to urinate has also been euphemistically described as surgery to enable urination ‘appropriately’, and ‘appropriate functioning’. ⁴² This example of masculinising surgeries justified through an appeal to functionality is concerning. The Brussels Collaboration on Bodily Integrity has asserted that surgical interventions might be medically necessary when an individual experiences a ‘serious time-sensitive threat’ to well-being, ‘typically due to a functional impairment’ ⁴³ but this does not appear intended to encompass norms that include standing up to urinate. The idea that boys need to stand up to urinate is more properly understood as a gender stereotype and a cultural norm.

Nevertheless, the Australian clinician group asserted that these rationales justified surgical intervention despite:

limited evidence reporting long-term outcomes of early surgical management for reasons of appearance […] with particular concern regarding sexual function and sensation. ⁴⁰

Clinical testimony of change has had an impact on statements by governments and institutions. For example, local assurances led the State government of Queensland, Australia, to report in 2012 that:

Research and investigation now advises against any irreversible or long-term procedures being performed on intersex children, unless a condition poses a serious risk to their health. ⁴⁴

Researchers in many jurisdictions have sought to ascertain current clinical practice, by collecting anecdotal evidence from parents and youth, by holding discussions with clinicians, and by examining hospital data and legal cases.^32,45,46 They have found little evidence of systemic change. In Australia, consideration of legal cases has looked at a small set of decisions by the Family Court, which has limited jurisdiction over some medical procedures that typically have a sterilising effect. One specific decision in 2016, adjudicated in Queensland, Australia, may have been instrumental in instigating an inquiry on protecting the human rights of people born with variations of sex characteristics in medical settings by Australia's national human rights institution. ⁶

The case involved ‘Carla’ (a pseudonym), a pre-school child with 17β hydroxysteroid dehydrogenase 3 deficiency, which was described by the judge as a ‘sexual development disorder’. The judge stated that the child had already had surgeries that ‘enhanced the appearance of her female genitalia’, without recourse to the court but indicating a prior investment in a particular future appearance and identity.^6,32,47

The case was taken to remove the child's gonads, and the judge determined that parents could authorise this treatment. The judgement made reference to obsolete data on cancer risks that recommended monitoring gonads rather than excising them. That reference to obsolete data has since been superseded by gendered approaches to sterilisation, where sterilisation only occurs in children with this trait who are raised female.^6,48

Carla's sterilisation was justified through an extensive discussion of the pre-school child's gender identity detailed in third party reports and by reference to gender stereotypes: the child had:

a range of interests/toys and colours, all of which were stereotypically female, for example, having pink curtains, a Barbie bedspread and campervan, necklaces, lip gloss […] She happily wore a floral skirt and shirt with glittery sandals and Minnie Mouse underwear and had her long blond hair tied in braids; and […] never tries to stand while urinating ⁴⁷

The child was too young to have agency, and this was deliberately and explicitly pre-empted: the judge commented that surgery would

be less psychologically traumatic for Carla if it is performed before she is able to understand the nature of the procedure. ⁴⁷

In discussion with some clinical stakeholders, this case has sometimes been dismissed as an exception, so it is important to recognise that the practices it describes align with other data, including information associated with relevant International Classification of Diseases codes. ⁴⁸ Further, a 2019 report by a Queensland paediatric and adolescent gynaecology clinic states that all but one patient with a related trait seen over the prior decade were sterilised; in relation to children with complete androgen insensitivity, ‘bilateral gonadectomies were most often done at infancy’, and all children identified with ‘ambiguous genitalia [at] birth’ underwent gonadectomies and feminising surgeries as infants or young children. ⁴⁹ The report gave no indication of any change in clinical policies or practices.

A 2013 media report documented that the Royal Children's Hospital Melbourne in the State of Victoria, Australia, ‘performs 10 to 15 genital reconstruction operations a year often on girls under the age of two’. ⁵⁰ In a clear echo of the language later used in the Family Court case Re: Carla, and indicating a common national understanding, these were reported as ‘gender assignment or genital enhancement operations’. ⁵⁰

In 2022 and 2023 two individual paediatric endocrinologists and surgeons in Australia have made public apologies for ‘past’ practices.^51,52 While apologies are a welcome development, this form of words relies on claims about past practices and so represents a continuing failure to address concerns regarding current practices. More significantly, these apologies have arisen only in the context of biomedical opposition to legislative proposals to regulate those medical practices. Given their longevity and lack of supporting evidence, claims about change and regret for ‘past’ practices might be more properly understood as a historically successful form of activism. Asserted with the testimonial authority of clinical speakers, such claims have served to deflect criticism, stymie investigation into medical practices, and inhibit reform.

Non-disclosure and motivated disclosure

The difficulties that people with intersex traits have in making sense of ourselves and the way we have been treated begin in hospitals and clinics. Non-disclosure or motivated disclosure of a diagnosis, and use of language that disconnects individuals from peer support, are widespread phenomena that leave individuals with significant gaps in understanding about their bodies and an inability to connect with others. These forms of disclosure mean that the authority of biomedical professionals is boosted, while the voices of community and parents are systematically marginalised in ways that limit agency and participation in decision-making.

In 1998, Kenneth Kipnis and Milton Diamond described a loss to follow-up created by a lack of disclosure to subjects of medical treatment, and a related lack of follow-up studies, as an ‘epistemological “black hole” that entraps parents, patients, and physicians in lies, secrets, and avoidable ignorance’. ⁵³ A clinical consensus statement in 2016 describes how ‘withholding medical history details, along with the possibility of negative medical experiences, likely contributes to patients with DSDs frequently being “lost to follow-up”’. ³⁹ In 2018, the New Zealand Office of the Privacy Commissioner ascertained that the clinical uptake of ‘more open’ forms of disclosure ‘seems to be variable’. ⁵⁴

More subtle forms of non-disclosure include a marginalisation of intersex organisations by framing their concerns as about people with a specific identity, ²⁹ rather than acknowledging them as peer groups open to people with all or some innate variations of sex characteristics.

These epistemic injustices have pervasive material consequences, for individuals, medicine and community. Poor experiences and decades of non-disclosure have created cohorts of people with intersex traits who lack information about their bodies and a name for their diagnosis, with an impact on our understanding of long term outcomes, health and social concerns. Early childhood teacher and woman with complete androgen insensitivity Margie McCumstie, for example, talks about how she was lied to as a youth, and underwent invasive surgery described to her as a hysterectomy. Asked to consent to having her body photographed, McCumstie risked being understood as noncompliant; she describes her refusal as impacting her access to medical records and her later relationships with clinicians. ⁵⁵ She only discovered the name of her diagnosis in 2022, around 30 years later. ⁵⁶ Relieved to finally discover that she has a community, she has since become involved in a local peer support organisation and written a book for children to help enable positive experiences of social connection and self-understanding. ⁵⁵

Disclosure may also take place in ways that are motivated to produce specific kinds of treatment decisions, for example, where children's physical characteristics are narrowly framed as biomedical and surgical problems with biomedical and surgical solutions. Parents and carers, and individuals with intersex traits, experience hermeneutical injustices that limit their ability to make sense of their child or themselves in ways other than pathological ways. These reflect medical decision-making within a silo, where non-clinical and psychosocial expertise – including the expertise of community and peers – is systematically devalued or excluded.

In a qualitative analysis of audio recordings of parent–clinician interactions in three ‘DSD’ clinics in the United States, Stefan Timmermans and others found that the medical ‘profession has been able to selectively appropriate challenges to its jurisdiction’ where attempts at reform are ‘weakened by discretion and autonomy inherent to professional medical power. In other words, professionals may interpret and implement patient-centred care in self-serving ways’. ¹⁰

Due to their epistemic advantages and the presentation of surgery as a solution, clinicians boost their professional authority by strategically deploying uncertainties to steer the decision-making process. ¹⁰

The authors found some sensitivity towards claims of negative outcomes from medical intervention and questions about necessity:

but this sensitivity is undermined by an optimistic and positive portrayal of genital surgery and by the clinical uncertainties and prognostic ambivalences accompanying any surgery decision. ¹⁰

As an example, the researchers found hypospadias to be framed as an objective biomedical problem with a surgical solution, and where alternative perspectives were subjective and partisan:

The urologist presented surgery as a matter of course, describing the hypospadias as a medical problem (“most severe”) that has social implications (“stand to pee,” “penetrative intercourse”) but for which a medical solution exists (“reconstructable”). The drawback to doing surgery was presented here as not addressing the medical problem and brought up only after the mother agreed to surgery. The surgeon presented a second, counterposition from bioethics but characterized the ethicist's view as “very extreme” and partisan, which not only politicized the ethical position but also suggested that bioethics is a matter of opinion. The parents agreed to pursue surgery. ¹⁰

The authors found parents to be susceptible not only to subjective ideas about medical necessity, but also contested clinical arguments about timing. With limited exceptions, the authors found that parents appeared to favour early surgery where clinicians favour early surgery, but were also willing to delay where clinicians asserted an absence of urgency.

Motivated information provision, and a belief that surgery can ‘fix’ the gender of a child can be seen in a description of parental education made in 2020 by surgeon John Hutson, chair of paediatric surgery at a leading Australian university, and recipient of one of Australia's highest public awards for his service, including his service to paediatric surgery:

The secret is that you’ve got to make sure that [parents] understand normal sexual development and the child's, the sexual development of this particular baby is incomplete. We haven’t figured out yet what the real gender is. And that doesn’t mean that we won’t be able to and that we won’t be able to fix it. ⁵⁷

Surgeons, perhaps unsurprisingly, focus on surgical solutions to problems that they identify as surgical in nature. Hutson remarks in the debate on his utilisation of his ‘toolkit’, to ‘fix’ a child to address a problem that he locates in parents:

Well, I think that from my point of view, I’m not worried about the rights of the child or moral issues when I see a baby. I’m worried about how the parents are reacting to the fact that they have found that the baby isn’t what they were expecting. And my job is to try and help them come to terms with that with whatever, you know, tools are available in the medical toolkit to fix them. To help them, if they think that's what required. ⁵⁷

Parents are typically dependent on a small number of clinical centres knowledgeable about intersex traits. Second opinions may be unavailable due to a scarcity of clinical specialists. ¹⁰ This, combined with the perceived objectivity and prestige associated with recommendations by senior clinicians, particularly surgeons, limits parents’ abilities to engage with alternative perspectives.

The centrality of clinical decision-makers is illustrated in a 2016 paper by obstetrician and gynaecologist Mike O’Connor where he describes a multi-disciplinary forum in Sydney as taking referrals on ‘clinical dilemmas’. He states ‘The parents’ and child's point of view is taken into account in all cases’. ⁵⁸ The parameters for these decisions are unduly narrow. In the case of children with congenital adrenal hyperplasia, for example, the decision is ‘with regard to early versus late clitoral reduction and vaginoplasty’, ⁵⁸ not whether or not surgery is medically necessary. What is meant by 'late' is not clearly defined.

Recent clinical statements have expressed the importance of peer support and shared decision-making, ³⁹ yet peer support and advocacy groups are poorly resourced and typically omitted as stakeholders in decision-making processes. A scoping review published in 2021 by Martin Gramc, Juerg Streuli and Eva de Clercq found that multi-disciplinary teams providing care to people with innate variations of sex characteristics are hierarchical, regard psychological support as ‘secondary’ and tend to exclude people with lived experience, despite calls in clinical literature for multidisciplinary collaboration, and collaboration with parents and support groups. The authors found that discussion of ethical principles referred to ‘shared decision making and information consent’, but with a ‘focus on parents rather than on patients’ and adults with lived experience. ⁵⁹

This marginalisation of non-clinical voices in the provision of care reflects a testimonial injustice, where their contributions are devalued or disregarded. It contributes to hermeneutical injustices that systematically limit the understanding of parents, children and youth, and limit their exposure to community and other forms of knowledge.

Marginalisation of psychosocial and mental health perspectives

The boosting of biomedical authority and an undermining of the epistemic authority of other groups is not limited to community and parental authority. It is also evident in a systematic marginalisation of mental health professionals in ways that limit participation in decision-making.

The epistemic authority afforded to surgeons and other biomedical clinicians impacts contributions to decision-making by other medical and allied health professionals. In a multidisciplinary team meeting regarding their 6-month-old child, led by a paediatric urologist, parents Eric and Stephani Lohman have described how they were offered two choices, both involving surgery. ⁶⁰ When the Lohmans questioned the lack of a non-surgical alternative, the surgeon ‘would not recommend that option’. Other participants in the team meeting:

were avoiding eye contact with us … there seemed to be a level of professional courtesy […] where medical professionals from another field did not step on the toes and disagree with each other, especially publicly […] It seemed that the design of the DSD team had a limitation, whereby if no one is willing to challenge the surgeon in the room, then the team is merely there to serve him or her with an audience. ⁶⁰

Lih-Mei Liao, a London-based clinical psychologist with more than two decades of experience in providing psychosocial support for people with innate variations of sex characteristics, has critiqued the ‘myth of patient-centred care’, where, despite routine mention of psychosocial support in recent medical publications, ‘biogenetic framing of DSD means that narratives of intersex are intrinsically pathology-centred’ and the role of psychologists in multidisciplinary teams is devalued ⁶¹ ; ‘care protocols are designed around medical procedures and marginalise non-medical contributions’. ⁶¹

In a study of psychosocial support in DSD teams in Scotland, England, Norway and Sweden, Liao and Katrina Roen found that clinicians had a limited understanding of how psychologists could contribute to patent well-being, and decision-making by individuals and carers: ‘even when psychologists are actively included in the care process, the parameters of that inclusion are often defined and constrained by medical professionals uninformed about their role and expertise’. ⁶² Liao comments:

None of the medical specialists interviewed could articulate the role of the team psychologist in ways that would make sense to a psychologist. ⁶¹

Specialists, they found, saw psychological input as relevant only after ‘medical decisions were already made or interventions completed’. ⁶¹ Hegarty and others question whether neglect of people with innate variations within psychology might also ‘contribute to the construction of some controversial interventions as medically necessary’. ⁶³

Reporting in 2021, Australia's national human rights institution conducted a national inquiry on the health and human rights of people born with variations of sex characteristics. In evaluating testimony from clinical, community, and legal sources, it found that biomedical clinicians and some parents believe that psychosocial rationales, such as social and familial integration and risks of future stigmatisation, provide a valid justification for surgical and other medical interventions without personal informed consent. However, this was in direct opposition to the statements of ‘specialist bodies in psychiatry and psychology [who] rejected the notion that it is necessary to ‘normalise’ sex characteristics for mental health reasons’ ⁶ because of the mental health consequences of elective treatment without personal consent on such fundamental aspects of people's bodies and identities.

This explicit rejection of psychosocial rationales by mental health professional bodies that are used by biomedical professionals to justify early surgical interventions is troubling and highly significant. This seems to suggest that biomedical professionals are overreaching outside of their area of competence, and perhaps also helps to explain the marginalisation or absence of such perspectives in clinical settings.

Misrepresentation of community and institutional testimony

Discussions of the claims of the intersex movement in clinical settings illustrate testimonial injustices, where dissenting voices are disregarded, or even misrepresented to diminish their plausibility. I show below that these include claims that individuals challenging medical practices are disgruntled or recipients of obsolete medical interventions, and that such individuals and their groups want to end all medical interventions – including those that are urgently needed to ensure physical health and well-being.

Dismissal of such claims dates back to the first years after the establishment of the first intersex-led advocacy organisation, the Intersex Society of North America, in 1993. A New York Times article in 1996 describes how one urologist ‘dismissed its members as “zealots” and refused to discuss the organization’; it ‘is the unhappy ones, the disgruntled ones, doctors say, who have joined the intersex movement’. ⁶⁴ The same claims about disgruntled former patients are being made today. In a medical education debate in 2020, John Hutson remarked on the impact of a history of medical experimentation on children with intersex traits:

… in the 1950s and 1960s doctors were learning to have, or learning how to treat what they thought was an important abnormality by medical and surgical treatments. And like all learning is done by trial and error. And so lots of the surgery, lots of the medical treatment, was either not very good or was actually totally wrong because at the time they didn’t actually know how to do it. So they had to learn how to do it, and there was no other way to learn than by trial and error. […] So one of the difficulties here is that the intersex community of the world are often, are often responding to the fact that they might have had treatment on themselves in infancy or childhood that turned out to be wrong, because we didn’t know at the time how to make it better. But every day we are learning how to do it better and better. ⁵⁷

This claim holds not only that individuals who speak up as adults against unwanted childhood surgery must have had obsolete forms of surgical technique, it misrepresents improvements to surgical techniques as the solution to dissent about the necessity of medical intervention.

In 2013, the Australian Senate committee managing the health portfolio conducted an inquiry on involuntary and coercive sterilisation. ⁶⁵ The inquiry provided a welcome opportunity for the country's parliament to scrutinise health and human rights issues, and consider testimonies from clinical and community sources on their merits. It found that beliefs that medical interventions can facilitate ‘parental acceptance and bonding’ and avoid harassment and bullying run the risk of ‘being a circular argument that avoids the central issues’ of parental anxiety and social acceptance. ⁶⁵ Acknowledging community input, ⁶⁵ it recommended development of human rights-based ‘guidelines [that] should favour deferral of normalising treatment until the person can give fully informed consent, and seek to minimise surgical intervention on infants undertaken for primarily psychosocial reasons’, while decisions should be subject to oversight. ⁶⁵

O’Connor has mischaracterised those recommendations, suggesting that it ‘it is impractical to defer all modifications of indeterminate genitalia until the child reaches an age of consent as proposed by the Australian Senate’. ⁵⁸ He complained that ‘key paediatric specialist concerns’ regarding the ‘problems of these children’ were ‘explained to the Australian Senate committee’ but, weighed against other evidence and moral perspectives, were found wanting. ⁵⁸ Indeed, these longstanding community demands have been persistently misrepresented. For example, a paper by two Australian paediatric endocrinologists in 2020 asserts:

Some patient groups advocate a complete moratorium on any genital/gonadal surgery until the individual is able to give informed consent. ⁶⁶

The authors attribute this statement not to a patient group but to two academics whose conclusions make a more nuanced case that, ‘in the absence of imminent dangers to patients’ lives or health’, medical interventions ‘must be managed with the least invasive means available and respect for each patient's autonomy’. ⁶⁷ The same misrepresentation about community demands for a ‘complete moratorium’ on all surgeries was attributed to the local community consensus Darlington Statement in a 2021 paper on the work of two multi-disciplinary teams in Australia. ⁶⁸

Despite the best efforts of community organisations, the recommendations of the Australian Senate committee report have not been implemented, but they have been followed by the community consensus statement; by UN Treaty Body recommendations; and by an inquiry by Australia's national human rights institution. In a 2021 report, the Australian Human Rights Commission found it necessary to rebut such misrepresentations, deployed in opposition to the possibility of legal regulation, attributed to an Australasian paediatric endocrinology organisation:

Some stakeholders seemed to base their opposition to any legal sanctions on the premise that all medical interventions modifying sex characteristics would be prohibited, in all circumstances. However, neither the Commission nor any stakeholders have advocated such a blanket prohibition. ⁶

The longevity of this misrepresentation speaks of a failure of mainstream clinical authors to adequately consider questions raised by people with lived experience and their organisations. In a context where boys needing to stand up to urinate is described as about ‘function’ and not social and parental anxiety, clinical authors have particularly failed to reflect on concerns regarding medical necessity and surgery timing. The persistence of such misrepresentations may amount to what Dotson describes as wilful ignorance.

The same failure is illustrated also in argumentation by Komal Vora and Shubha Srinivasan who enumerate both a lack of consensus regarding timing of surgery and a ‘lack of universal interpretation’ of medical necessity, in a justification of the free exercise of clinical judgement. ⁶⁶ A rationale for such a different threshold of agreement – consensus and ‘universal interpretation’ – and why both should be prerequisites for reform of decision-making in relation to contested practices, were not explained.

Bioethics and epistemic injustice

Bioethics, like biomedicine, contributes to epistemic injustices when it excludes or fails to address human rights perspectives and critiques of individuals harmed by medicine, and when it acts simply to validate clinical authority.

Ethical principles published in 2010 by ethicist Lynn Gillam and paediatric endocrinologists Jacqueline Hewitt and Garry Warne, clinicians at an Australian children's hospital, are particularly notable in this respect. The authors secured endorsement (and legitimacy) for their ethical principles from a grandly named ‘Fifth World Congress on Family Law and Children's Rights’ in 2009. Despite a swift critique by some clinical colleagues, ⁶⁹ the ethical principles have gained traction. They have been cited favourably by an Australian Senate committee inquiry, ⁶⁵ and a 2016 global consensus statement. ³⁹ They have formed the basis of a derivative decision-making framework published by the government of the Australian State of Victoria in 2013, ⁷⁰ they provide a benchmark for analysis comparing bioethical principles and human rights law, ⁷¹ and are regularly updated. ⁷²

The process and outcomes demonstrate a lack of engagement with community, mental health and diverse moral perspectives, and the endorsement was made on the basis of a misrepresented counter-position. The ethical principles are:

(1) minimising physical risk to child; (2) minimising psychosocial risk to child; (3) preserving potential for fertility; (4) preserving or promoting capacity to have satisfying sexual relations; (5) leaving options open for the future, and (6) respecting the parents’ wishes and beliefs. ⁷³

These appear superficially to be broadly acceptable. However, in an elaboration of psychosocial risks that can be mitigated through medical intervention, the authors identify some risks that are more troubling:

Risk that child will not be accepted by parents in the chosen sex of rearing, […] reduced opportunities for marriage or intimate relationships […] social stigma associated with having genitalia which do not match the gender in which the person lives. ⁷³

However, no psychosocial professionals participated in the elaboration of these risks, professional bodies of mental health clinicians have rejected mental health rationales for early surgical interventions grounded in gender stereotypes, and the statements about the role of stigma lack an evidentiary basis: as described in 2006 and 2016 clinical statements, there is no evidence regarding the impact of surgery on risks of stigmatisation. ³⁹

The reference to marriage prospects was made at a time in Australia when, despite acknowledgement of non-binary gender identities in some documents, only heterosexual marriages were legally recognised. The case for marriage equality was nevertheless already a matter of public debate. In this context, the identification of impaired marriageability as a ‘risk’ to be mitigated appears to express narrow normative ideas about the kinds of identities and behaviours that children might grow up to hold.

These concerns are explicable as the outcome of an epistemically unjust process. The paper is described as an implementation of Rawls's reflective equilibrium, ⁷⁴ the outcome of dialogical analysis between a clinical ethicist and two paediatric endocrinologists. Reflective equilibrium seems intended to be the outcome of a process of reflection and dialogue between people with diverse moral perspectives, in a search for coherence between those different perspectives. In this sense, the absence of diverse testimonies from this process is striking. It is all too easy to achieve coherence amongst such a small and homogenous group, but it is less certain that the principles can be justified. The inclusion of individuals with diverse moral perspectives, including those reflecting lived experience and mental health and psychosocial expertise, could have achieved a very different outcome.

The authors reported that ‘we started from “first principles”, so to speak, rather than with the existing bioethics and sociology literature about DSD and the ethics of genital surgery’. ⁷³ The authors also described their process as focusing on ‘judgements of expert clinicians in actual individual cases’. This inattention to prior work is also striking, suggesting an inattention to alternative moral and ethical perspectives. At time of publication, Alice Dreger, David Sandberg and Ellen Feder critiqued the principles on this basis, and for largely ‘responding to the major DSD debate of a decade ago, namely over genital surgeries in infancy. ⁶⁹ Their critique calls instead for a focus on provision of psychosocial support to help families and individuals overcome stigma.

Due to its appeal to authority through endorsement by a World Congress, authors citing the paper may have taken that endorsement as a vindication of its detailed framework and methodology. However, the composition and standing of the Congress, its relationships with major international children's rights organisations and the detail presented at the event to support the resolution are unclear. The Congress is run from Australia, but little information exists online. ^b In contrast, the Child Rights International Network is an established and global networks of child rights organisations. Its statements about bodily integrity include concern about treatments that reinforce sex assignment in intersex children consistent with human rights jurisprudence. ⁷⁵

Incomplete information about events at the World Congress is available. A presentation was made by Garry Warne, a participant in the 2005 clinical workshop and 2006 clinical consensus statement, and a resolution adopted at the event. On the basis of communications with two of the original authors in 2022, it appears that a copy of the presentation is no longer available. The resolution adopted at the World Congress reads as follows:

The World Congress:

(a) encourages the adoption of the ethical practices and principles of the Royal Children's Hospital, Melbourne [enumeration of headline principles]

(b) notes the debate as to whether issues of disorders of sexual development should be left to the time when the child attains Gillick competence, even in terms of therapeutic intervention. ⁷⁵

It is possible that all or a proportion of World Congress participants were aware of the authors’ elaboration of these principles in relation to psychosocial stigma and marriage prospects. It is not clear that they were aware of the lack of evidence supporting such rationales. However, the resolution also frames debate about treatment as being one where ‘even in terms of therapeutic intervention’, decisions should be deferred until children develop the capacity to consent. As with later statements by Australian clinicians that have been rebutted by the Australian Human Rights Commission, ^{6 ,c} this substitutes a debate about what constitutes medical necessity with a different debate about whether or not children should have access to essential treatment. It constructs a simplistic straw man argument that appears to have misled those that endorsed the resolution.

Had the World Congress participants had access to accurate information about community perspectives on medical treatment, other resolutions at the same event show that a different kind of statement is plausible. Participants endorsed a resolution on children and adolescents with ‘gender identity development dysphoria’ that asserted support for ‘Children and their family being able to participate fully in decision-making processes about treatment options’. ⁷⁶

The construction of these ethical principles exemplifies what Joseph Stramondo, citing Mills, expresses as the role of normative professional bioethics in authoritatively preserving ‘the status quo of power’. ⁷⁷ In 2015, following community engagement, and with national debate taking place on marriage equality, the government of Victoria quietly removed language in the derivative government resource identifying ‘reduced opportunities for marriage or intimate relationships’ as a psychosocial risk that could be mitigated through medical intervention. ^d As with later revisions to the principles by Gillam, ⁷² certain of the most egregious aspects of the principles have been removed while leaving the edifice itself otherwise intact.

Substantively the same argumentation is made by a South African bioethicist, Kevin Behrens, in 2020. Behrens asserts that ‘the world is less than perfect’ with the implication that surgery might be preferable to parental abandonment, mutilation, or infanticide. ⁷⁸ This sidesteps broader considerations about the role of psychosocial support and education in addressing stigma to instead naturalise a focus on the particular role of surgeons.

Bioethics and epistemic justice

Alternative bioethical perspectives are evident in a series of bioethics reports published in Europe since 2012. These have challenged unnecessary medicalisation and legacies of harm, and these have also drawn on alternative and human rights perspectives. However their impact on clinical practice has been limited as they have lacked authoritativeness and clinical acceptance.

The German Ethics Council called in 2012 for financial compensation where interventions ‘no longer correspond to today's accepted medical standard’, ⁷⁹ access to psychosocial support, and limits to parental rights to consent to treatment. In the same year, the Swiss National Advisory Commission on Biomedical Ethics called for protection of children's right to physical integrity and self-determination, deferral of non-urgent treatments, access to psychosocial support, and recognition of the suffering of people with innate variations. ⁸⁰ In focusing on historical medical practices, both reports imply – without adequate evidence – that clinical norms and practices have changed.

A report on the rights of children in biomedicine by the Committee on Bioethics of the Council of Europe directly challenges many current clinical practices, remarking not only on clinical anxieties about parental and social rejection but also a failure of clinically endorsed protocols 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. ³⁸

The report cites guidelines that lack clinical endorsement. ⁸¹ Like those guidelines, the Council of Bioethics analysis does not appear to have impacted clinical practice. The authors note that the ‘European Society of Pediatric Urology has formally objected to human rights criticism’ and what they saw as a failure to capture positive perspectives, to justify continuing pre-existing practices with parental consent. ³⁸

Reformist perspectives in bioethics can also be seen in a history of interdisciplinary work by Karkazis, ⁸² Holmes, ⁸³ Feder, ⁸⁴ Elizabeth Reis, ⁸⁵ myself, ⁸⁶ and others. These are typically grounded in either personal lived experience or engagement with adults with lived experience. It is plausible that these might diminish their testimonial credibility in paediatric multidisciplinary teams. It is also plausible that, as described by Timmerman, ¹⁰ challenges to clinical authority from bioethics are simply dismissed.

Bioethicists should be concerned about the manufacture and utilisation of bioethical principles by biomedicine. Reis questions the impact of bioethics which, due to ‘the emergence of the legal doctrine of informed consent in the late 1950s should have had a greater impact’ than it did. ⁸⁵ She states:

It remains an open question whether the abstract ideals of bioethics—respect, patient autonomy, and the requirement of informed consent—are alone adequate to secure that improvement, or whether legal actions (or the threat of litigation) or some other reforms will be required to effect such change. ⁸⁴

In an interview about the relationships between advocacy and bioethics, I conclude that:

advocacy is what happens when bioethics fails. It happens when bioethics fails to achieve outcomes in medicine that are grounded in firm evidence. It happens when bioethics achieves outcomes that disregard fundamental human rights norms—and it should happen in these situations. ⁸⁶

Towards epistemic justice and liberation

Biomedical clinicians have been given the authority to determine what happens to infants and children with innate variations of sex characteristics, and increasingly to foetuses and embryos with variations. ⁸⁷ Alongside this, they have held the authority to set the terms of debate, and they manage access to information by families, individuals, marginalised clinical professionals, and, in many spaces, the prestige and institutional connections to connect with policy-makers. This has been used in ways that misrepresent the demands of the intersex movement, and that evade engagement with questions about stigma, medical necessity, and personal consent. This is a significant overreach. Sadly, well-intentioned attempts to ameliorate and incrementally shift medical practice from within have failed to achieve change.^81,88,89

In this paper I have identified particular concern with epistemic injustices and their material effects in sources in Australia. It is notable, then, that, responses to draft legislation in Australia to protect the rights of people with innate variations of sex characteristics in medical settings now demonstrate notably different responses from psychosocial and biomedical clinicians. Mental health professional organisations have supported legislated restrictions on medical interventions. At the same time, some medical professionals have asserted ‘that psychosocial factors or “social integration” should be valid reasons to undertake medical interventions without personal consent’ while others ‘rejected the argument that intersex healthcare is influenced by social expectations about bodies’. ⁹⁰ Biomedicine has yet to come to terms with what it does, and it continues to resist challenges to its primacy.

The LGBTQ movement has provided powerful lessons about how to organise in the face of stigmatisation and pathologisation, and the importance of social and community connection to overcome shame and stigma. While some discussion of intersex within LGBTQ spaces can sometimes seem to be epistemically exploitative and non-reciprocal due to a position of LGBTQ organisations as intermediaries and experts, and a focus on the mere existence of intersex people in debates about the rights of LGBTQ people,^29,91,92 the movement also offers powerful examples of solidarity and partnership. ²⁴

The impacts of pervasive testimonial and hermeneutical injustices can be seen in debates about who has the right to name the population, failures to engage with the substance of intersex human rights claims, and the co-option of attempts at reform by powerful vested interests. Those same vested interests, and the legacy of poor disclosure to individuals and families, make for a slow community development process. In this context, even the formation of an intersex movement that offers ‘resources for resistance’ in the face of injustice ‘is itself a social achievement and not a social given’. ¹⁶

The intersex movement is fundamentally a liberation movement. Like other liberation movements, it aims to allow individuals to make our own choices about our bodies and identities ourselves, to the maximum extent possible. Medical interventions and their timing should take full account of the heterogeneity of the population and pluralism in individuals’ values and preferences.

Fricker's conception of epistemic injustice assists in clearly identifying how biomedicine has been able to maintain its authority, including through exclusion of other forms of knowledge, misrepresentation, and dismissal of lived experience. It is a sad state of affairs to still need to address wilful ignorance and misrepresentation.

Yet also, in an analysis of epistemic agency under oppression, Pohlhaus draws on work by Dotson and María Lugones to articulate the importance of not focusing too much attention on those responsible for epistemic injustices. ⁹³ In particular, Lugones calls for flexibility on the part of outsiders, and resistance of ‘the injunction for the oppressed to have our gazes fixed on the oppressor and the concomitant injunction not to look to and connect with each other’. ⁹⁴

Despite adverse collateral effects from a growing culture war focused principally on the existence of transgender people, ²⁹ intersex organising is building community, evidence and resources. It is taking intersex out of its recent confinement in a narrow biomedical silo, and drawing on other forms of knowledge, including subjugated knowledges and professional expertise of community members. On the basis of longstanding community demands, together with allies and using new neutral nomenclature, new infrastructures are slowly being implemented in some regions: applying fundamental human rights norms; developing platforms and demands on health, psychosocial support, human rights, and research needs; conducting research and inquiries; and developing respectful statistical norms.

Medical attitudes and practices are being scrutinised like never before. The United Nations has convened an expert meeting on ending human rights violations and published a briefing note, while UN Treaty Bodies are issuing consistent and concrete recommendations for protections, psychosocial support, and redress. ¹ Malta, Iceland, Germany, Greece, and Portugal are amongst the first countries to legislate protections, while regulations have been introduced in some jurisdictions in India and elsewhere. ⁹⁵ More data on implementation is needed. New infrastructure includes the introduction of legislation in the Australian Capital Territory to protect the human rights of people with variations of sex characteristics in medical settings, ⁹⁶ mechanisms to ensure oversight and accountability, and funding for community-based psychosocial support, alongside new national statistical standards and anti-discrimination legislation. ²⁵ As described by Liao, change is being ‘brought about by intersex activism outside medicine rather than progress within medicine’. ⁹⁷