https://orcid.org/0000-0002-2128-0019
ABSTRACT
Purpose
This paper examines the subjective experience of medical interventions on intersex bodies to reduce cancer risk.
Methods
Twenty-five individuals with intersex variations took part in semi-structured interviews, analysed through thematic discourse analysis.
Results
Intersex bodies were positioned as inherently sick and in need of modification, with cancer risk legitimating surgical and hormonal intervention. This resulted in embodied shame, with negative impacts on fertility and sexual wellbeing. However, many participants resisted discourses of bio-pathologisation and embraced intersex status. Some medical interventions, such as HRT, were perceived to have increased the risk of cancer. Absence of informed consent, and lack of information about intersex status and the consequences of medical intervention, was positioned as a human rights violation. This was compounded by ongoing medical mismanagement, including health care professional lack of understanding of intersex variations, and the objectification or stigmatization of intersex people within healthcare. The consequence was non-disclosure of intersex status in health contexts and lack of trust in health care professionals.
Conclusions
The legitimacy of poorly-evidenced cancer risk discourses to justify medical intervention on intersex bodies needs to be challenged. Healthcare practitioners need to be provided with education and training about cultural safety practices for working with intersex people.
Introduction
Intersex is an umbrella term which describes a wide range of innate bodily variations in sexual characteristics that do not fit typical definitions of male or female bodies, and includes variations in anatomy, reproductive organs, hormonal patterns and/or chromosomal patterns (Office of the High Commissioner for Human Rights, Citation2019). Other terms used by people with intersex traits include clinical terms of “disorders of sex development”, the ameliorative “differences of sex development”, and individual diagnostic terms (Senate Community Affairs Committee, Citation2013). Some intersex variations are diagnosed prenatally or at birth; others are diagnosed at puberty or in adulthood (Jones, Citation2018; Rosenwohl-Mack et al., Citation2020). Many intersex people undergo medical intervention to modify sex characteristics, involving the removal of gonadal tissue or organs (Carpenter, Citation2023). Drawing on Foucault’s (Citation1978) theorization of the regulation of bodies through processes of normalization, Davis and Murphy describe medical professionals who determine the necessity of such surgery as executing a “frightening biopower over intersex bodies” (Citation2013, p. 132). In some cases, medical intervention is justified through appeals to medical necessity and urgency to ensure physical health (Senate Community Affairs Committee, Citation2013). In many cases, including some justified through appeals to medical necessity, medical interventions are grounded in social and cultural rationales that seek to make atypical bodies conform to ideas about how female or male bodies should appear and function (Carpenter, Citation2018b). This reflects a bio-pathological discourse where bodily difference needs to be corrected (Danon & Krämer, Citation2017). Medical intervention has been described as “an act of intimate violence performed on intersexed bodies” (Davis & Murphy, Citation2013, p. 129) rectifying what is erroneously deemed to be a “medical and psychosocial emergency” (Nidal et al., Citation2020, p. 97e2).
The consequences of this normalizing surgery can be profound, including loss of sexual sensitivity, poor sexual function, sexual pain, and infertility (Köhler et al., Citation2012; Nidal et al., Citation2020). Medical intervention can also lead to psychological distress in adulthood (Karkazis, Citation2008) and shame associated with repeated medical examination of the genitals (Hart & Shakespeare-Finch, Citation2021; Roen, Citation2019). Early surgeries pre-empt individuals’ rights to express their own values and preferences about how they might want to be treated, and how they might want to live in the world. Consequently, surgery on healthy intersex bodies has been strongly opposed by intersex advocates (Carpenter, Citation2018b) and human rights institutions (Amnesty International, Citation2017; Human Rights Watch, Citation2017). Consensus medical guidelines appeal to clinical eminence in the absence of evidence to support medical practices. Inherently contradictory, they recommend a “cautious” approach to medical intervention while also justifying early surgeries for reasons of appearance (Hughes et al., Citation2006). However, surgery to modify healthy intersex bodies continues to be undertaken (Carpenter, Citation2022b; Human Rights Watch, Citation2017; Roen, Citation2019; Senate Community Affairs Committee, Citation2013).
In this context, it is challenging to differentiate between medical necessity due to urgent necessity, and assumptions about medical necessity due to the influence of social and cultural norms, which influence clinical beliefs. The removal of gonadal tissue from intersex bodies often soon after diagnosis, is often positioned as essential, to address the inherent risk of cancer (Looijenga et al., Citation2007; Weidler et al., Citation2019). Biomedical discourses of cancer, which draw on powerful moral imperatives to engage in medical intervention when there is cancer risk (Willig, Citation2011), serve to continue the legitimation of medical biopower over intersex bodies, and the continuation of surgical intervention (Carpenter, Citation2018b). However, evidence of cancer risk has been low quality, perhaps exacerbated by the prevalence of prophylactic surgeries. Monitoring of gonads has been recommended since at least the mid-2000s (Looijenga et al., Citation2007) and has been recommended by clinical consensus statements and reports (Hughes et al., Citation2006; Senate Community Affairs Committee, Citation2013; Weidler et al., Citation2019). Today the risk of cancer is increasingly understood to be low for many intersex variations (Weidler et al., Citation2019), while high risks are better evidenced for people with 46 XY gonadal dysgenesis (Ata et al., Citation2021). It was only in 2019 that a US clinical team published a protocol for retention of gonads in children with androgen insensitivity (Weidler et al. Citation2019).
An Australian Senate Committee which considered the evidence for cancer associated with intersex variations concluded that the complexity and diversity of cancer risk has been oversimplified, elevating the perceived or communicated risk, meaning that prophylactic surgery is often conducted unnecessarily (Senate Community Affairs Committee, Citation2013). Clinicians who reported to the committee conflated cancer risks with concerns about “sex of rearing” and “likelihood of gender dysphoria later in life” (Senate Community Affairs Committee, Citation2013, p. 87), demonstrating that their decisions are mediated by socially determined concepts of gendered normality and abnormality (Carpenter, Citation2018b, Citation2022a). The Senate Report concluded that “clinical intervention pathways stated to be based on probabilities of cancer risk may be encapsulating treatment decisions based on other factors, such as the desire to conduct normalising surgery” (Citation2013, p. 88).
An example is provided by a Family Court of Australia case of a child with an androgen metabolization deficiency, adjudicated in 2016. Children with this trait have testes, but their physical appearance at birth can vary between typical female and male appearance. In 2006, a clinical consensus statement had recommended monitoring gonads in children with this trait (Hughes et al., Citation2006). The decade since had seen a shift whereby sterilizations occurred not on the basis of cancer risks, but only in cases where children are assigned female (Carpenter, Citation2018a). Cancer risks no longer provide a rationale for removal of gonads. However, the judge in the Family Court case relied not only on gender stereotypes to justify a gonadectomy, he cited obsolete data on cancer risks and asserted that monitoring gonads was not an option (Carpenter, Citation2018a).
Peard et al. (Citation2023) report that the prevalence of prophylactic gonadectomies “at a very young age” is itself the cause of a lack of data on “[e]stimating the true prevalence” of gonadal tumours. Nevertheless, over the last decade, evidence has continued to show the high prevalence of prophylactic interventions. For example, a report suggests that all but one child seen by a clinic in Queensland Australia have been sterilized, including all children with androgen metabolization and androgen insensitivity traits (Adikari et al., Citation2019). The case for sterilization due to cancer risks was already absent for children with complete androgen insensitivity syndrome in 2013, and within the last decade, it has been found lacking in children with partial androgen insensitivity syndrome (Carpenter, Citation2022b; O’Connell et al., Citation2021; Senate Community Affairs Committee, Citation2013).
Community organizations and human rights institutions have called for reform to medical practices. The Office of the High Commissioner for Human Rights (OHCR) has drawn attention to the rights of the child, including freedom from forced and coercive medical treatment. These include interventions justified by overly “loose conceptions of medical necessity or therapeutic treatment” without an adequate evidence base (OHCHR, Citation2019). The Australian Human Rights Commission (AHRC) has called for criminalization of inappropriate interventions, alongside improvements to psychosocial support and oversight. The Commission calls for legislation and treatment to be guided by a human rights framework incorporating a bodily integrity principle, a children’s agency principle, a precautionary principle, a medical necessity principle, and an independent oversight principle (Australian Human Rights Commission, Citation2021).
Surgery pre-empts the ability of individuals diagnosed in infancy and childhood to personally consent, sometimes intentionally (Carpenter, Citation2023), while substitute consent by parents can be based on guidance motivated to produce particular treatment outcomes (Sanders et al., Citation2008; Timmermans et al., Citation2018). Many parents are confused or overwhelmed by medical terminology about intersex variations (Boyse et al., Citation2014), which makes it difficult to understand the diagnosis or treatment being recommended, during a stressful and emotional time in their lives (Hart & Shakespeare-Finch, Citation2021; Roen, Citation2019). Parents may feel that they have no choice but to agree to surgery, with parental dissent from medical opinion often undermined (Timmermans et al., Citation2018). Minimal psychological support for parents is available to inform decision making (Lampalzer et al., Citation2021). Similarly, those diagnosed with intersex variations in adolescence and young adulthood report feeling pressurized to agree to medical intervention without full informed consent, due to minimal information and support provided by HCPs (Steers et al., Citation2021).
It has been argued that there is a need for social science research to understand the impact of medical interventions on intersex bodies (Ferrara & Casper, Citation2018), outside of a bio-pathological medical discourse (Danon & Schweizer, Citation2021). There is also a need for investigation of “the ways in which the actors who perpetrate human rights violations and discriminations against intersex people … . are legitimated and protected by dominant social norms and institutions” (Monro et al., Citation2021, p. 434). Recent research has explored subjective experiences of pathologisation, social impact and epistemic injustice (Hart & Shakespeare-Finch, Citation2021), and definitions of successful outcomes and preferences for clinical management (Suorsa-Johnson et al., Citation2022) in accounts of intersex people. There is an absence of research that focuses on the experiences of intersex people who underwent medical intervention due to a purported risk of cancer, and the meaning and impact of such interventions. This study aims to address this gap in the research literature. The research questions are: How do people with intersex variations construct medical interventions to reduce cancer risk, and what is the perceived impact of such interventions on those who have experienced them?
Methods
Study design and theoretical framework
This sub-study was part of the broader mixed methods Out with Cancer project (Allison et al., Citation2024; Power et al., Citation2022; Ussher, Allison, et al., Citation2022, Citation2023; Ussher, Perz, et al., Citation2022; Ussher, Power, et al., Citation2023; Ussher, Power et al., Citation2022; Ussher, Ryan, et al., Citation2023) that examined LGBTQI experiences of cancer from the perspectives of LGBTQI patients, their caregivers, and healthcare professionals. The study included same-gender attracted, trans (binary and non-binary) and intersex people who had cancer, and intersex people who had medical interventions to reduce a risk of cancer. An integrated knowledge translation (iKT) framework guided the study. IKT is a dynamic, collaborative process between researchers and knowledge users to achieve actionable research outcomes (Graham et al., Citation2006). Following iKT principles, a steering committee comprising LGBTQI people with cancer, cancer clinicians, and representatives from LGBTQI health and cancer support organizations were actively involved through co-design in all stages of the study.
This paper presents the qualitative analysis of open-ended survey responses and interviews with people with intersex variations who had medical interventions to reduce the risk of cancer. Two intersex steering committee members and co-authors with health qualifications and expertise in research, advocacy and peer support, were actively involved through throughout all stages of the study. This included study design, development of study materials, recruitment, coding and analysis of data, production of this manuscript and dissemination of findings. The other co-authors were endosex people (whose innate sex characteristics fit normative medical or social ideas for female or male bodies).
The collaboration and co-construction of knowledge between intersex and endosex team members aimed to democratize our research practices and reduce power asymmetries (Monro et al., Citation2021). This partnership shaped the research so that the purpose, limitations and intended outcomes were transparent and in accordance with the interests and priorities of those being researched (Monro et al., Citation2021). Discussion between endosex researchers and intersex steering group members facilitated reflexivity (Berger, Citation2015), a critical evaluation and acknowledgement of the ways our social positions and experiences impacted the research process and outcomes. Intersex steering committee members provided valued insights into the concerns within the intersex community and the social processes and power dynamics that informed participants’ subject positions.
The study received ethics approval from Western Sydney University Human Research Ethics Committee (ref. no. H12664) with secondary approval from ACON, and all participants provided informed consent.
Recruitment
Participants were eligible for this sub-study if they: (a) had undergone a medical intervention related to a purported cancer risk; (b) have an intersex trait; and (c) were at least 15 years old. Participants were invited to opt into the study through intersex advocacy and support organizations, cancer and LGBTQI community organizations and support groups including the study partner organizations, social media (Facebook, Twitter, Instagram), cancer research databases (Register 4, ANZUP) and LGBTQI community events. Snowball sampling was also used. Participants were asked to pass the study information to someone they knew who fitted the study criteria. The study was open internationally, although recruitment focused on Australia and other English-speaking countries such as the USA, UK, Canada and New Zealand. Data was collected between September 2019 and September 2021.
Participants and procedure
In this paper, we draw on the accounts of the 25 respondents with intersex variations who reported medical interventions for a purported cancer risk. Participants represented a range of intersex variations and ages (mean age 41, range 20–76 years), see . The majority were Caucasian (84.0%) and identified as lesbian, gay or homosexual (28.0%) or queer (32.0%), with a minority identifying as bisexual or pansexual (16.0%) or heterosexual (16.0%); 40.0% were non-binary or gender fluid, 24.0% were men, 24.0% were women and 12% reported their gender as “intersex”. The majority lived in Australia (32.0%) or the United States of America (24.0%) in an urban (58.3%), regional (33.3%) or rural (8.3%) location, were not in a relationship (63.6%) and had post-secondary education (64.0%).
Table I. Participant characteristics.
Table II. Information about medical interventions for cancer risk.
Participants were on average 21 years old at the time of the medical intervention to reduce cancer risk (median 18 years; range 0-54y), with 36.0% reporting that they were involved in decision making. The most common reported site of cancer risks was gonad (48.0%) and most participants had undergone surgical medical intervention to reduce cancer risk (88.0%). Five participants had been diagnosed with cancer (breast, leukaemia and skin cancers).
Participants took part in a two-stage study. All participants completed an online survey. At the end of the survey participants were invited to volunteer for a one-to-one interview to investigate their experiences in greater depth. A subset of 3 survey participants volunteered to complete a 60-minute interview.
Materials
Survey
Full details of the survey are described in detail elsewhere (Ussher, Allison, et al., Citation2022). This paper focuses on responses to open-ended questions about intersex participant’s experiences of cancer risk interventions, including involvement in decision making and feeling informed about the intervention, consequences of the interventions, concern about cancer occurrence and interactions with healthcare professionals.
Semi-structured interview
Semi-structured interviews, conducted in a conversational style, were undertaken to explore participants experiences in more depth. The interviews were conducted by experienced researchers trained in interviewing about sensitive topics (RP and KA), and were audio-recorded over the telephone or using video-conferencing software. Interview methods and facilitation were adjusted for inclusion of people with impairments. For example, interviews were conducted in a written format or conducted for shorter durations over multiple sessions.
Participants were asked about their experiences of the cancer risk intervention including what information they were provided about the need for medical intervention and the nature of their interactions with HCPs associated with medical intervention; whether they were involved in decision making about medical intervention, and the nature of this involvement; discussion of their intersex status with HCPs in the context of a cancer diagnosis and consequences of this for their care; the impacts of medical intervention on their lives, including on their identities, relationships and sexual wellbeing; and experiences finding support networks and information related to medical interventions or cancer care.
Data analysis
Thematic discourse analysis or decomposition (Stenner, Citation1993; Ussher et al., Citation2015) was used to analyse open-ended survey items and interviews. This analytic technique combines thematic analysis (Braun et al., Citation2018) with post-structuralist discursive approaches (Gavey, Citation1989; Ussher & Perz, Citation2014), informed by the notion that meanings are socially formed through discourse (Davies & Harre, Citation1990). Drawing on Foucault’s (Citation1984) work on the relationship between the construction of meaning in language and the subjectivities that are produced as a result, discourses make available subject positions that are taken up in talk, influencing how a person sees themselves and how others perceive them (Davies & Harre, Citation1990; Ussher & Perz, Citation2014). This leads to focus on the social processes and power dynamics that are produced and reproduced through discourse (Ussher & Perz, Citation2014). Dominant social discourses, such as the bio-medical discourse, produce “regimes of truth” that can be internalized through a process of subjectification (N. S. Rose, Citation2007). Discursive subject positions can be enforced by others, adopted by choice, or resisted and subverted (Willig, Citation2011, p. 898). The focus of analysis in this paper is the discursive meanings and impacts of the prophylactic medical interventions for purported cancer risks experienced by people with intersex variations.
Analysis was conducted using an inductive approach, with the development of discursive themes and identification of subject positions being data driven, rather than based on pre-existing research. Interviews were transcribed verbatim and checked for any errors by listening to the audio whilst reading the transcript. As part of this process the transcripts were de-identified and participant names replaced with pseudonyms. Through a collaborative process with intersex co-authors, a subset of interviews was read line by line, with notes made to capture first order concepts or codes that represented commonality across accounts, such as “feelings about the intervention” and “finding information”. Each co-author brought suggestions of the first order codes to a meeting and through discussion and decision making we grouped concepts where commonalities were identified to create higher-order codes. This process allowed for the refining and defining of codes and the final coding frames was devised which included codes such as “agency/choice”, “iatrogenic effects of intervention” and “interactions with healthcare professionals”. Open-ended survey and interview data were then imported into NVIVO and coded by four members of the research team. Consistency in coding across codes and coders was checked by a senior member of the research team. Each coded section was summarized to facilitate further identification of commonalities within the data. These summaries were read and commented on by all authors and the codes were then re-organized and grouped into discursive themes and subject positions. All authors read the preliminary themes and through discussion, the themes were reorganized and refined. When consensus was reached, final themes were developed. All co-authors then read and provided comments on the interpretation and reporting of the data, as well as language.
In this paper, we use the term intersex to refer to the participants as a group, while acknowledging the diverse and contested nature of language used for and by this population (Davis, Citation2011). When quoting participants, we provide their self-identified sex/gender descriptor and age. Two participants who are of the same gender and age are distinguished as (a) and (b). To maintain confidentiality, we do not provide information about participants’ individual intersex variation or the medical interventions they have experienced.
Results
Inherently sick and in need of modification: cancer legitimates surgical and hormonal intervention on intersex bodies
Participants reported that the inherent risk of cancer within the intersex body was positioned by medical practitioners as the primary rationale for medical interventions experienced in infancy, childhood, or adulthood. Surgery or prescription of long-term hormonal medication were considered a “necessity”. For example, a 28-year-old woman was informed by doctors she had “30% risk of developing cancer” if she did not have her “streak gonads removed”. She elaborated, telling us, “I have never had cancer—doctors have always explained risk factors as a result of being intersex, including having surgery and long term (necessary) use of HRT.” A 40-year-old non-binary participant who had their testes “pulled down (stuck in the inguinal canal)” as a child, provided us with an online link to cancer risk information, to explain this intervention.
The risk of cancer from having undescended testes, even after they have been moved down into the scrotum, is higher than the general population (https://www.cancer.org/cancer/testicular-cancer/causes-risks-prevention/risk-factors.html). It is likely that before I turn 45, I will need to have them removed.
Doctors had also “removed two small pea-sized undeveloped ovaries, ‘gonadoblastoma’ - which were suspected of becoming cancerous” during surgery for a hernia when this participant was a child. Similarly, a 25-year-old non-binary participant said on their survey that they had “One ovary removed for ‘potentially precancerous cysts”, with the emphasis indicating the medical advice given.
One of the consequences of this medical advice and intervention was the positioning of the intersex body as inherently cancerous, internalized as fear of getting cancer, even when participants had undergone surgery or hormonal intervention: “I’ve had constant fears that I’ll get cancer (I had surgery 10 years ago)” (woman, 27); “The cancer is there all the time. Whether it progresses where I can’t see it, I don’t know. It can get into the deeper layers of tissue & lymphs I believe” (non-binary, 54). The word alone “cancer” was described as “enough to strike fear into anyone’s heart”, leading one participant to engage in counselling to learn “how to not live in fear that I may wind up with cancer in the future” (non-binary, 40), even though they had had multiple “preventative” surgeries.
However, many participants resisted bio-pathological discourses and challenged the unevidenced or poorly evidenced “fake accusation of cancer risk” (intersex, non-binary woman, 43), as well as the legitimacy of medical interventions undertaken to avoid “theoretical cancer” (non-binary, 22). For example, a 42-year-old non-binary woman participant told us “after my gonadectomy at age 30 I asked the surgeon if there was any sign of cancer to which he replied “‘No the tissue looked perfectly healthy’.” Having initially been “relieved at that news”, the participant later thought “have I removed healthy tissue for no reason?” Questions were also raised about the lack of “evidence based” research, which could identify “the data that these are risks. What is the percentage of (intersex) people without surgeries that get cancer?” (intersex, non-binary woman, 42). Others asserted that the “completely unnecessary, expensive” medical modification of intersex bodies, rationalized by a “fake” discourse of cancer risk, caused “long term harm” (non-binary, 33); “I was harmed because of an assumption I would have cancer” (non-binary, 31). Within these accounts, “medical establishments” were positioned as coercive and indiscriminate in “promoting this cancer risk to all intersex people regardless of the variation” (intersex non-binary woman, 43).
It was just the cancer. Because the surgeon and the medical team involved with me have imparted this fear of cancer into me (saying) “why would you live with the cancer risk?” And I just was sort of brainwashed by it. But when I look now at the intersex community, it seems to be, regardless of the variation, these perceived risks lead into surgeries being recommended. (non-binary woman, 43)
Biopathological cancer risk discourses served to conceal what some participants saw as the real rationale for medical intervention on intersex bodies, gender stereotypes and so-called normalization, “cancer was the excuse to perform ‘normalizing’ surgeries on my genitals and to give me hormone treatment” (woman, 49); “cancer risks are often used to assimilate intersex people into the binary regardless of the variation” (intersex, non-binary woman, 43). Rather than accepting bodily diversity, it was argued that “intersex bodies are treated as male or female bodies with an illness, with a condition that needs to be fixed”, based on “biased outdated research” (intersex, non-binary woman, 43). Narrow definitions of “normal” bodies informed these biomedical discourses and practices, as “it was asserted that not removing gonads would allow ‘masculinized female bodies’ which was listed as a ‘danger’” (intersex, non-binary woman, 43).
Some of us have had gonadectomies, clitorectomies, hysterectomies & mastectomies as preventative measures, but are often ill-advised from the archaic attitudes from the 50’s & 60’s which still have far reaching consequences if you’ve been born with an intersex variation. (non-binary, 55)
Positioning cancer risk as “fake” may have functioned to distract from fear of cancer, a form of cognitive dissonance, “it was easier for me to accept that doctors had removed healthy tissue to make me conform to the binary and were lying to me about it than it was to accept that this was a life-or-death intervention” (non-binary, 40). Challenging medical discourse and intervention could lead to solidarity with others, as a participant told us “I am now a part of the global intersex community and have joined the crusade to bring an end to intersex surgeries” (intersex, non-binary woman, 43).
“Cheated of a full life”: psychological and material consequences of medical interventions
“So much internalised shame”: impact of medical interventions on embodiment and identity
Participants positioned medical interventions conducted in infancy and adulthood as “horrible … like torture” (non-binary, 33) and “an act of harm” (non-binary, 31) that negatively impacted their relationship with their bodies. Several participants wished for the return of their pre-surgical body: “I will never be able to love what doctors left behind on my body. [I] would rather take my gonads back as well as my “penis” (intersex, 44); “All I’d like out of it is my hormones back. Just [to be] how I felt before all of this. I was literally a different person” (non-binary woman, age 43).
Others described intrapsychic consequences of the medical interventions, including being conflicted about their identities. As a 50-year-old participant stated: “Having an intersex variation and the way it was mismanaged (and I was abused by doctors) made me question who I am and what I am.” A non-binary person in their 40’s commented, “it made me angrier about people assuming that I fit a female template and can live that way”. However, they embraced this emotion, “I think the anger was ultimately good for me.”
The social stigma surrounding intersex status and medical interventions contributed to internalized shame and stigma for many participants, reinforcing secrecy in social interactions: “shame is a huge part of why I’m not open about my intersex variation” (non-binary, 40); “there is so much internalized shame tied into the experience of being intersex, it’s hard to disclose” (non-binary, 23). Shame and stigma also impacted family members. A 54-year-old man (a) told us that his surgery was “almost even more stigmatizing for my partner and family to talk about. My partner made up a story about it to tell his workplace why he took time off.” Another participant talked about the secrecy associated with his intersex body, perpetuated by his mother, instilled a sense of shame.
My mother checked my genitals every day until I was 12 and complained. She said she had a secret about me and would take it to the grave, which she did. She often called me a monster and a freak. I overheard her talking with my father sometimes about me when they found out I would never hit puberty. It was a big deal, but the word intersex had not been invented back then (male, 54a)
These experiences were compounded by broader societal discrimination, such as being bullied without “mercy,” abusive home lives, subjected to sexual abuse and domestic violence. This led to some intersex people feeling like “we don’t feel we will ever fit in or be accepted as valid” and they were “living like hermits” (non-binary, 55) as a result. This was because “heteronormative folk can’t put their finger on what is different about you as an intersex person or why they don’t like you … bullying ensues, at any age” (non-binary, 55).
“Doctors destroyed my body”: impact of medical interventions on fertility and sexual wellbeing
Medical interventions to modify intersex bodies had material impacts on fertility and sexual wellbeing. A 54-year-old woman told us, “doctors sterilized me when I was a child for no medical reason”. Others only found out that they were infertile due to medical intervention when they were told about their intersex variation in adulthood: “when the diagnosis was first made and I discovered I could [not] continue my bloodline through procreation I became severely depressed” (woman, 49). Many participants reported being “extremely worried” about the impacts of the “theoretical cancer” or surgery on their sex life including fears of “pain during sex” and “loss of sexual sensation” (non-binary, age 22). Scarring was an issue for numerous participants: “scarring was minimal but unsightly and painful” non-binary, 22); “since I had a gonadectomy and am dependent on HRT now, and have scar tissue, it of course influences my sexual relations” (non-binary, 32); “the scar tissue impedes my ability to orgasm” (intersex, 46).
Others said that due to the removal of their natural hormone producing anatomy they struggled with loss of libido and that this ultimately impacted their intimate relationships. For example, a 45-year-old intersex participant explained, “I completely lost my libido and amorous feelings for my ex-partner […] sex became a chore” because “with no hormones, I had no sex drive”. She told us that “not being able to become lubricated in sexual acts and things like that and just a desire to want to partake in activities completely evaded my brain, I just couldn’t ever think about it”. This put pressure on relationships where sex “just became about trying to fulfil a male’s needs and that sort of, you know, underpinned my own happiness in the relationship” (non-binary woman 43). Loss of sense of self as a sexual being resulted in some participants fearing a future when they would be “single and alone”:
I don’t expect to ever meet anyone again, let alone have a sex life of any sort. Circumstances don’t favour it. I had no clue I would end up single and alone at this age. My body is ailing and I’m so dried up and atrophied from lack of hormones for years now, I probably could not turn that around even with potions and lotions. I have to use a dilator to accommodate a penetrative partner and it is a lot to go through, incredibly painful procedure over a course of time. This is common with female intersex. I don’t think about sex much or ever feel horny anymore. (non-binary, 55)
These accounts demonstrate the detrimental impact of hormonal and sexual changes following medical intervention to reduce cancer risk on sense of self and psychological wellbeing.
“It has increased my cancer risk”: distress associated with iatrogenic impact of interventions on general health
The permanent, irreversible removal of natural hormone producing anatomy meant that many participants were “put on HRT”. However, this produced concern that rather than reducing their cancer risk, it was increased, “everything I’ve ever read about HRT suggests to me that it has increased my cancer risk” (non-binary, 31). When asked about fear of getting cancer after the medical intervention for cancer risk a 23-year-old woman responded: “They removed my gonads, but due to that I have to take HRT, and that gives me a higher risk of breast cancer, now double that with my mother having had breast cancer”.
Other participants reported chronic health conditions such as “constant injuries/fractures and arthritis” from being on “HRT for years” due to fear of cancer risks associated with HRT (non-binary, 55). Given these conditions were “acquired, not congenital” led this participant to state, “I feel totally cheated out of a full life” (non-binary, 55). Many of those who had already had cancer also directly attributed their diagnoses to HRT: “The reason why I had all the problems with cancer is because doctors gave me 25 years of hormones so that I can be a ‘girl’, without any information—I got cancer because of their binary system” (non-binary 54).
[prior to the surgery] I still had my own health and happiness in my body. And, you know, I was fit, strong and healthy. After the natural hormones … were removed, it was sort of a downward spiral of trying to overkill me with the binary female hormones…. It just led to all different types of symptoms, such as I started getting lumps in my breasts. (intersex, 41)
These experiences were a source of acute distress for many people, as a woman in her 20’s told us “being told at 16 that if I didn’t have surgery I’d develop cancer, and that long term HRT use will shorten my life expectancy by 10–15 years has left me with significant PTSD ten years later” (non-binary woman, 43). These accounts suggest the long-term iatrogenic consequences of medical interventions to reduce cancer risk may not have outweighed the purported benefits for participants.
“Going in blind”: lack of informed consent for surgical intervention to modify intersex bodies
“I wasn’t told about any of this”: human rights violation and secrecy surrounding interventions done as a child
Medical intervention was rarely an informed choice. Many participants described surgery conducted in infancy or childhood for a “purported” cancer risk as being undertaken “without my consent and for no immediate medical need” (woman, 49). These interventions were positioned as mutilation that violated human rights, as a 22-year-old woman stated: “A perceived higher [cancer] risk is not sufficient to justify the removal of gonads or other hormone-producing glands… IGM [intersex genital mutilation] is a human rights violation”. Parents responsible for medical decision making were described as having been coerced by medical practitioners, due to the parents’ fear of cancer, lack of information about alternatives to surgery for their young intersex child…. As a 31-year-old non-binary person explained, “the assumption I would get cancer was used to coerce my parents into agreeing that I should be harmed as a child. I will never know my natural body”. The implicit power of the medical discourse of cancer risk also enabled medical coercion in adulthood, as a 27-year-old woman commented, “patients are so often forced into making a decision to have surgery as doctors pull their ugly ‘you might get cancer and die’ card”.
Medical professional directives on secrecy reinforced medical biopower, through instilling shame and social isolation. A 27-year-old woman told us, “I was closeted for seven years as being intersex due to doctors telling my parents and I to keep my diagnosis a secret from everyone I knew”. A number of participants said that as children they were “lied to by family members and doctors” and “only put pieces together as an older adult” (intersex, 45) to uncover the truth about their intersex variation and the interventions they experienced. For example, a 40-year-old non-binary person recalled “I had stomach cramps (as a child) that were extremely painful. I was told that I was struggling with constipation” but instead, “my testes were pulled down, and I was never informed”.
While the surgery was a success, it was done in secret, and neither I nor my parents were officially informed of what that surgery was about. [… Years later] I asked my mother why I had surgery, and she looked at me like I had three heads. She adamantly denied I had surgery. It wasn’t until I turned 35 when I learned what truly happened to me at seven years of age.
Missing medical records prevented participants from finding out more about what had happened to them as children, compounding experiences of harm. A 54-year-old non-binary person commented, “this seems normal for many intersex people of my age group thanks to the modules of John Money back in the day–hide it all, never tell the patient. So much harm done”.
“My diagnosis was not disclosed to me”: Lack of information about intersex status, need for intervention and iatrogenic consequences as an adult
Secrecy lies and lack of information about intersex variations continued in adulthood for many participants. A 43-year-old non-binary woman, whose intersex variation was first identified in adulthood, said medical practitioners concealed her diagnosis for five years and that doctors later tried to cover up the mistreatment:
When my diagnosis was made, it was not disclosed to me. It was only revealed when I went for IVF five years later. The doctor who had to eventually tell me was furious (in his letters to other doctors) that I hadn’t been told about it, but he still didn’t tell me; he sent me for more “placebo” tests that had already been done years earlier so that he could make it look like they had just discovered my variation and could then reveal a cancer risk.
Lack of “properly evidenced, non-sensational information” (non-binary, 47) about cancer risk meant that it was difficult for participants’ to make informed decisions about the need for medical intervention when intersex variations were identified in adulthood: “I had no real information on risks of cancer” (man, 53); “there’s very little information to inform decisions. It’s almost impossible to give free, prior and informed consent to treatment for cancer risks” (man, 54a).
Everything seems to be divided into “male risk” and “female risk” and it’s hard to know whether I should focus on my chromosomes or my hormones, or what happens to risk in the presence of significant levels of both oestrogen and testosterone (man, 45)
Others expressed concerns that medical advice was often based on “guesswork” and was “Ill-advised” as “doctors operate under a blindfold in their efforts to deal with things they do not understand” (non-binary woman, 43). Participants said that “more transparency about surgeries performed is warranted” (non-binary, 41) as the focus of medical practitioners was on “just cancer risk” (non-binary woman, 43) and failed to consider the potentially long-lasting iatrogenic consequences of interventions:
Nothing was really explained by the fact that we’ll try and replace these hormones, your natural hormones will be replicated with female hormones or anything like that. That wasn’t explained. It was just cancer risk. (non-binary woman, 43)
Participants said that there is a need for more “information about risk levels, evidence on risk levels, evidence and information on alternatives to surgery including monitoring” (man, 54a). Participants also called for “models of informed consent” that “take into account giving patients full information (resources), offering appropriate psychosocial support services, connecting individuals to other intersex people and SAFE counselling support” as well as “giving time to make a decision” (woman, 28). The need for intersex people to have agency in decision making was positioned as paramount: “far better to be monitoring health properly these days, than cutting everything out just in case. Let intersex people decide” (non-binary, 55).
“I love who I am”: resisting discourses of bio-pathologisation
Many participants resisted bio-pathological discourses that positioned intersex people as inherently sick and needing to be fixed. Celebration of being intersex was embraced by many, however, this was often alongside acknowledgement of hostile social contexts in which they lived: “I love who I am. I do not love society’s stance on intersex people” (woman, 27); “I wish I didn’t have all the social baggage and medical complications that go with my intersex person, but if I didn’t have it I wouldn’t have the same personality–I wouldn’t be me” (non-binary woman, 42).
For many participants, finding out they were intersex “was like finding the last piece of a long-lost jigsaw puzzle” that helped them make sense of earlier life experiences: “Growing up I never connected to the other ‘girls’, was always the odd one out, could not relate to their issues etc”(intersex, non-binary woman, 46). Finding community among other intersex people was described as an inclusive empowering experience:
It was like so crazy the first time I felt solidarity with another intersex person, and especially since all the doctors have put it across that I was this one in five million and so rare. And then I find out that in fact it’s not rare. You know, there are lots of intersex people out there trying to raise awareness of what’s happening. And I mean, it’s a whole community. (intersex, non-binary, 43)
Some participants were “very, very public about being intersex and engaging in conversation around intersex rights” (non-binary, 32). A non-binary person in their 20’s said, “since I discovered that I’m intersex a few years ago, I have been very comfortable being Out and connecting with community. I consider myself an intersex advocate and I use my platform to educate others” (non-binary, 31). Participants said they used their platforms to call for essential intersex rights:
Leave us be to decide what is best for us. Nothing about us, without us. Stop doctors frightening new parents into normalizing surgeries for their kids. Make intersex accepted as a natural form. It is! (non-binary, 22).
“Medical professionals don’t understand my variation”: ongoing medical mismanagement
“I wish doctors had better training”: lack understanding of intersex variations has adverse health consequences
Experiences of ongoing medical mismanagement of intersex bodies in adulthood were common. Lack of medical professional knowledge about intersex variations and adverse experiences during clinical interactions negatively impacted upon participant’s experiences of healthcare. For example, a 53-year-old man (a) told us, “lack of information and evidence seems endemic in the treatment of people with intersex variations, even 20 years later.” Others commented on lack of knowledge around specific intersex variations: “most medical professionals don’t understand my variation” (man, 57); “they are aware of my variation, but don’t understand it at all” (woman, 49). This meant that the implications of intersex embodiment were often not incorporated into health care, “just because the medical profession knows I am 47XXY does not meant they include this knowledge in the management of my health, quite the contrary actually” (male, 54b). One participant disclosed their intersex variation on a clinical admission questionnaire where intersex was listed as an option and later found out that it was not recorded on their patient record, “I asked if intersex was also recorded–no” (man, 53). This had adverse implications for health outcomes and preventative screening, as “most health care workers are unaware of the risk” (non-binary, 40) of cancer for some intersex people.
Our community has a very high risk of breast cancer (XY male risk is 1–675 but this does not apply to XXY individuals who studies have shown have a 50–80 fold risk). Instead XXYs report doctors refusing to give them referrals for mammograms (man, 54b)
Not having intersex variations acknowledged or understood could also have adverse consequences for engagement in health care. For one participant, previous medical mismanagement led to an avoidance of healthcare, “I have a lifelong phobia of hospitals, medical people, and ongoing physical issues from what was done to me as a child” (intersex, 45). A non-binary woman in their forties told us, “because I have what doctors call a pubescent body, pap smear tests injure me and one I had put me in hospital because it bruised my cervix” (non-binary woman, 43). Another participant reported feeling “reluctant to have PAPs now and probably won’t ever again” because of difficult experiences with screening:
The female doctor was very, very rude to me and hurt me as I can’t take a normal adult size speculum. I have to have a child size one as I have infantile sized private parts. She tried forcing it and injured me, so had to find a child size instrument much to her annoyance (non-binary, 55)
Lack of knowledge about intersex extended to mental health care, with one participant describing how “my counsellor struggled with understanding what I’d been through–it was new to her, as well” (non-binary, 40). These experiences were described as reflecting a “complete lack of infrastructure and guidance” (non-binary woman, 43) for health care professionals in the treatment of people with intersex variations. This led to a call for increased awareness and understanding from HCPs, “I wish doctors had better training” (intersex, 45). More specifically, it was important for medical practitioners to understand the histories of intersex people and the traumas they may have experienced: “The public and health pros need to realize there has been a LOT of trauma involved in the intersex person, particularly those diagnosed with cancer or any medical challenge on top of what they already have to live with” (non-binary, 55).
“Treated like a freak”: medical objectification and stigmatisation of intersex people
When medical professionals did acknowledge intersex variations, participants often felt objectified and scrutinized as an “unusual” case. For example, “two endocrinology professors” reportedly told a participant they “often discussed my particular case whilst playing golf together, because it was unusual and great for the medical students I was also subjected to in hospital, sometimes 20 of them at a time” (non-binary, 55). This participant was “horrified my case was so notorious” and told us “privacy must be ensured among medical staff”. Other accounts of dehumanization included a participant being “treated like a freak by the woman who did the mammography” and not experiencing empathy during painful procedures as “the technicians who did the fine needle biopsy giggled continuously through the entire, painful experience” (woman, 68).
Some medical professional reactions to people with intersex variations were described as “very alarming and offensive”, leading to the suggestion that “medicks need to watch their reactions if they examine someone with some sort of variation, because not only is it upsetting, it causes worry something might be physically wrong” (non-binary, 55). Experiences of “prejudice” and hostility towards intersex people on the part of medical professionals were common. For example, a 47-year-old non-binary participant said that “medical staff have been prejudiced about my disability and illness as well as about my intersex variation and gender”. Another participant said that “two of my specialists stopped speaking to me after [[my]] sharing about being intersex. It’s clear there is a great deal of stigma around it” (non-binary, 41). This participant suggested “health care professionals need to stop viewing those in the LGBTQI community as ‘untouchables’.”
“Even opening this conversation is often impossible”: non-disclosure and a lack of trust in health care professionals
One impact of ongoing medical mismanagement was selective disclosure of intersex variations to health care professionals. Participants carefully considered who they disclosed to, telling us “I don’t disclose that I’m intersex (i.e., prefer the term and identify with it) to everyone. Those who do know have not always responded positively unfortunately” (non-binary, 22); “I had bad experiences with doctors around the time of my diagnosis, so I try to avoid discussing it with medical professionals except where it’s clinically relevant” (non-binary, 46). Some participants took on the responsibility of managing HCP reactions to their disclosure, to elicit a constructive response:
If you sort of try and talk to a doctor about something he obviously doesn’t understand, it’s sort of perceived as a failure on their part and it’s not taken very well. I mean, what I’m trying to do now is when I’m talking with experts and medical professionals is I just try and be professional and polite and sort of try and talk to them on their level. (non-binary woman, 43)
For others, mistrust and previous negative experiences meant that disclosure to HCPs was avoided: “even opening this conversation is often impossible … it’s hard to trust medical people in general for me” (intersex, 45); “unsurprisingly, many intersex people often have trust issues regarding medical and legal issues” (non-binary, 33). Difficulty finding HCPs who were culturally safe with intersex people, and the consequences of HCP prejudice, negatively impacted upon psychological wellbeing, “It is challenging to find any medical professional who is comfortable once my possible intersex has been disclosed. It is exhausting having to deal with the implications of mental illness/being trans that stem from this disclosure” (intersex, 46). Need for avenues of information and support for intersex people around disclosure and medical mismanagement was identified:
I suppose some information about disclosure would be useful. If intersex status is relevant, how it is relevant, and when you might choose to disclose. Referrals onto intersex peer support. Avenues of complaint or recourse when facing medical mistreatment. Your right to refuse procedures or examinations you don’t feel respect your bodily autonomy as an intersex person (non-binary, 31)
Discussion
This paper examined the construction and experience of medical interventions undertaken to reduce a purported risk of cancer, from the perspective of intersex people who had been subjected to such interventions. Our analysis provided insight into the implications of bio-pathological discourses that constructs intersex bodies as “damaged goods” (Senate Community Affairs Committee, Citation2013, p. 69), which require regulation through medical intervention (Danon & Krämer, Citation2017). Drawing on biomedical discourses which position intersex bodies as inherently cancerous (Looijenga et al., Citation2007; Weidler et al., Citation2019), the participants in this study underwent prophylactic surgery and/or ongoing hormonal intervention to reduce their purported cancer risk.
Some participants internalized bio-pathological cancer risk discourses through a process of subjectification (N. S. Rose, Citation2007), positioning their bodies as inherently cancerous, regardless of medical intervention having taken place, resulting in fear and anxiety. Other participants resisted self-positioning within bio-pathological cancer discourses, and questioned medical biopower, demonstrating agency and self-determination. These participants were drawing on discourses of resistance promulgated by intersex advocacy movements (Carpenter, Citation2016, Citation2022a; Monro et al., Citation2021), human rights critiques (Amnesty International, Citation2017; Human Rights Watch, Citation2017), and intersex researchers (Davis & Murphy, Citation2013; Monro et al., Citation2021), demonstrating the power of intersex activism (Feder, Citation2021).
However, resistance does not necessarily protect against injury and many participants reported anger, distress and long-term harm, confirming that psychological wellbeing is severely compromised through medical biopower (Davis & Murphy, Citation2013). Participants in our study positioned medical interventions conducted to address a purported cancer risk as “torture” and an “act of harm” which represented a “human rights violation”, drawing on discursive constructions of medical intervention as an act of violence performed on intersexed bodies (Carpenter, Citation2018a; Davis & Murphy, Citation2013, p. 129). Many participants reported uncertainty about identity and psychological distress in adulthood, as reported previously (Karkazis, Citation2008), as well as shame connected to the social stigma associated with intersex status (Davis & Murphy, Citation2013; Ferrara & Casper, Citation2018). The corporeal consequences of surgery, including sexual pain, loss of sexual sensitivity, scarring and compromised fertility were also a source of distress, confirming previous research (Köhler et al., Citation2012; Nidal et al., Citation2020). This had implications for sense of self and intimate relationships, increasing the likelihood of social isolation of intersex people (Henningham & Jones, Citation2021; Liao, Citation2003). Social isolation was compounded by broader societal discrimination, including bullying and social exclusion, identified in previous research with intersex people (Jones, Citation2016). Perceived increased risk of cancer or experience of other chronic health conditions due to the long-term impact of hormonal intervention, was a further source of distress. These findings demonstrate that the ethical premise that medical intervention does no harm to the intersex person is not being followed. In many cases, monitoring can be an alternative to surgery and leaves hormone producing anatomy in place (for those with this anatomy) avoiding potential need for hormonal intervention, which has its own consequences (Looijenga et al., Citation2007).
Discourses of cancer intersect with bio-pathological discourses of intersex embodiment in shaping experiences of medical interventions. Dominant discourses of cancer draw on powerful moral imperatives (Willig, Citation2011) and position the cancerous (or precancerous) body as in need of medical intervention (Stacey, Citation1997). The power of poorly-evidenced cancer discourse serves to continue the legitimation of medical biopower over intersex bodies (Carpenter, Citation2018b), providing a socially compelling counterpoint to critiques that medical intervention of healthy intersex bodies is an unnecessary human rights violation (Amnesty International, Citation2017; Carpenter, Citation2018b; Human Rights Watch, Citation2017). The power of “the cancer card” is difficult to resist, with diagnosis of cancer risk carrying moral connotations related to aetiology and responsibility (Willig, Citation2011). Once diagnosed, or positioned as at risk of cancer, individuals are expected to adhere to medical dictates, following a medicalization of the body (Parton et al., Citation2017). Cancer is frequently constructed as a sign of degeneration or decay indicative of the cancer patient’s inner self-destructiveness or weakness (Stacey, Citation1997), which means being positioning within cancer discourses can be a stigmatizing experience (Harcourt & Frith, Citation2008), associated with feelings of vulnerability and self-mortification (Ehrenreich, Citation2009). The positioning of the intersex body as inherently cancerous thus reinforces broader bio-pathological constructions of intersex bodies, and by extension intersex people, as faulty, abnormal and needing to be fixed (Carpenter, Citation2018a; Carpenter, Citation2018b; Senate Community Affairs Committee, Citation2013). When intersex people do get cancer, as was the case for several participants in the present study, their perception of being inherently cancerous is confirmed, even if the cancer is not related to their intersex variation. This is positioned as a double jeopardy, which adds to distress.
Most participants did not give consent for medical intervention, either because it was conducted when they were infants or children, or because information about the nature and impact of interventions was not provided to their parents, or to themselves as adults, before they underwent surgery, as reported previously (Davis & Murphy, Citation2013; Ferrara & Casper, Citation2018; Human Rights Watch, Citation2017). Participants described themselves or their parents being given insufficient information about cancer risk and the impact of medical intervention, and feeling pressured into surgery, as reported in previous research with parents of intersex children (Boyse et al., Citation2014; Davis & Murphy, Citation2013; Sanders et al., Citation2008) and intersex individuals diagnosed in adolescence or early adulthood (Steers et al., Citation2021). The majority expressed regret at having had surgery before the possibility of being able to give consent (Diamond & Garland, Citation2013; Ferrara & Casper, Citation2018), and wanted properly evidenced information to inform decision making, as recommended in ethical guidelines (Victorian Department of Health, Citation2013).
Insistence on secrecy in relation to medical intervention, including parents being told not to discuss intersex variation with their child, exacerbated distress. Adherence to medical biopower is facilitated by these exhortations to secrecy, following the longstanding advice and practice of the 1950’s pioneer of intersex surgery, John Money (Carpenter, Citation2018b; Human Rights Watch, Citation2017; Senate Community Affairs Committee, Citation2013). Our findings confirm previous reports that parents are sometimes not told about surgery conducted on their infant with an intersex variation (Human Rights Watch, Citation2017), or are told not to discuss surgery or the intersex status of their child with others (Sanders et al., Citation2008), and young adults are told to keep their intersex variation a secret (Steers et al., Citation2021). This instils a sense of shame, embarrassment and confusion (Roen, Citation2019), with normalization surgery serving as shame management (Lih-Mei et al., Citation2015). Intersex people describe being lied to by parents and doctors as worse than the physical alteration of their bodies (Ferrara & Casper, Citation2018), with long term impacts including trauma and stigma (Brinkmann et al., Citation2007; Ferrara & Casper, Citation2018; Hart & Shakespeare-Finch, Citation2021). Some intersex people avoid medical treatment because it is too embarrassing to talk about their intersex status, or due to fear of medical abuse (Senate Community Affairs Committee, Citation2013).
Evidence of resistance of discourses of bio-pathologisation after discovery of intersex status, through celebration of being intersex, making sense of life experiences and solidarity with other intersex people, demonstrates the importance of open dialogue and acceptance of intersex variations within families. Described as “epistemic injustice”, secrecy also serves to isolate intersex people from social support, and facilitates internalization of discourses of intersex bodies as faulty and shameful (Hart & Shakespeare-Finch, Citation2021). There was no evidence of psychological support for parents, children or adults with intersex variations when making decisions about surgery, or dealing with the consequences, as reported in previous research with parents (Gramc et al., Citation2021; Lampalzer et al., Citation2021), and young people with intersex variations (Steers et al., Citation2021). This reinforces the observation that there is little acknowledgement of the impact of medical discourse and practice on the psychological wellbeing of intersex people (Ferrara & Casper, Citation2018)
Psychological distress and ongoing harm were compounded by lack of understanding of intersex variations on the part of health care professionals, which resulted in mismanagement of health care in adulthood. Health care professionals working in oncology (Ussher, Allison, et al., Citation2022), midwifery (Hanna et al., Citation2022), emergency medicine (Lien et al., Citation2021) and general practice (Prandelli & Testoni, Citation2020), report lack of knowledge and confidence in treating intersex people, with many exhibiting inaccurate and biased assumptions. Our findings demonstrate that this has a direct impact on intersex people, resulting in dissatisfaction with health care due to lack of trust in medical professionals, adding to the trauma resulting from medical interventions (Carpenter, Citation2016; Roen, Citation2019). Medical objectification through scrutiny of bodily difference, evaluated through a narrow and socially constructed gendered norm, is commonly reported by intersex people (Hart & Shakespeare-Finch, Citation2021; Meyer-Bahlburg et al., Citation2017), as was the case for many of our participants. Previous research has identified objectification and dehumanization through repeated medical examination of the genitals of intersex children (Hart & Shakespeare-Finch, Citation2021, Meyer-Bahlburg et al., Citation2017; Roen, Citation2019). The findings of the present study demonstrates that objectification continues in adulthood, through other forms of medical examination, and negative comments made by health care practitioners about intersex bodies. Being mandatorily investigated without engagement in dialogue reinforces the sense of being objectified (Roen, Citation2019).
Hostility from health care professionals may also be exacerbated for intersex people with diverse gender and sexuality identities, most participants in our study, as lesbian, gay, bisexual, trans and queer (LGBTQ) people commonly report experiencing homophobia and trans phobia within health care (Power et al., Citation2022; Ussher, Power et al., Citation2022). LGBTQ people are often reluctant to disclose their sexuality and gender identities to health care professionals due to fear of discrimination and substandard care (O’Hanlan et al., Citation1997; St Pierre, Citation2012; Ussher; Power et al., Citation2022). Our findings demonstrate that this is also the case with people who have an intersex variation, who fear hostility and experience exhaustion associated with the process of disclosure. Lack of disclosure of intersex status is an understandable response to a lifetime of mismanaged and violating healthcare experiences, combined with broader societal discrimination and exclusion (Carpenter, Citation2021; Ferrara & Casper, Citation2018). The consequences is that intersex people may avoid health screening or medical treatment because it is too embarrassing to talk about their intersex status, or because of fear of medical abuse (Senate Community Affairs Committee, Citation2013). Lack of disclosure of diverse sexuality and gender identities has been found to be associated with burden of regret and secrecy (D. Rose et al., Citation2017), lack of engagement in health care and screening (O’Hanlan et al., Citation1997; St Pierre, Citation2012), and reductions in mental health outcomes (Morris et al., Citation2001), as was evident in accounts of some of the intersex participants in the present study.
Strengths and limitations
Strengths of the study include the focus on the construction and experience of medical intervention to reduce cancer risk from the perspective of intersex people, addressing the call for social science research on lived experience in this field (Ferrara & Casper, Citation2018). The inclusion of intersex people as co-investigators to facilitate co-construction of knowledge is a strength (Davis & Murphy, Citation2013; Monro et al., Citation2021). A limitation is that the research was conducted as part of a broader LGBTQI cancer study, with most of our participants identifying as LGBTQ. Many intersex people understand themselves to be cisgender and heterosexual (Jones, Citation2016). Framing of intersex people as a population defined by sexual orientation or gender identity, as well as tokenistic inclusion of intersex people within discussion of broader LGBTQI (lesbian, gay, bisexual, queer, trans and intersex) issues and policy, has been criticized (Carpenter, Citation2021), and may impact on engagement with LGBTQI research. Future research on the impact of medical interventions to reduce the risk of cancer in intersex populations should recruit participants within and outside a LGBTQI framework. Research should also disaggregate the experiences of intersex participants from those of endosex sexual and gender minorities (Carpenter, Citation2020), as has been undertaken in the present study.
Conclusion and implications for practice
The continuation of medical intervention on healthy intersex bodies is a human rights issue, which robs intersex people of their bodily integrity. The findings of this study demonstrate that the use of discourses of cancer risk as a rationale for medical intervention facilitates medical biopower and has the potential to cause long term psychological and physical harm for intersex people. Claims of cancer risks have been poorly evidenced, but their effects on people subjected to unnecessary sterilizing surgeries have been dramatic. The legitimacy of poorly-evidenced cancer risk discourses to justify medical intervention on intersex bodies needs to be challenged, as do the normative and gendered assumptions underlying many rationales for intervention. Psychological support needs to be offered at every stage of an intersex medical and diagnostic journey and to those who are living with the trauma of medical violation. Health care professionals, including those working in cancer care, need to be aware of the legacy of trauma associated with medical intervention on intersex bodies (Ferrara & Casper, Citation2018), and the experience of double jeopardy for those who are diagnosed with cancer. Health care practitioners need to be provided with mandatory education and training about practices of cultural safety and humility when working with intersex people (Ussher, Perz, et al., Citation2022; Ussher; Power et al., Citation2022). Intersex advocates and human rights institutions have asserted the right to health, freedom from discrimination, and the right to freedom from cruel, harmful or degrading treatment (Behrens, Citation2020). These rights are long overdue. Only when these rights are universally available to intersex children and adults, and theoretical risks of cancer are not used as a justification for unnecessary surgery, will harm reduction and better physical and mental health outcomes be achieved.
Authors’ contributions
JU and JP designed the study and prepared the application for funding, in collaboration with The Out with Cancer Study chief investigators and partner investigators. The survey was developed by JU, KA, and RP in collaboration with the Out with Cancer Study team, and our stakeholder advisory group, including MC and BC. Data were collected by RP and KA. JU, MC, RP, SR, and BC conducted the qualitative analysis, and collaboratively wrote the paper, with critical input from JP. All authors approved the final paper.
Informed consent
The study received ethics approval from Western Sydney University Human Research Ethics Committee (ref. no. H12664) with secondary approval from ACON. All participants provided informed written consent.
Acknowledgments
The chief investigators on the Out with Cancer Study were Jane Ussher, Janette Perz, Martha Hickey, Suzanne Chambers, Gary W. Dowsett, Ian D. Davis, Katherine Boydell, Kerry Robinson and Chloe Parton. Fiona McDonald and Antoinette Anazodo are partner investigators. We acknowledge Colin Ellis, Samantha Sperring and Jack Thepsourintheone for assistance in data coding. We thank our stakeholder advisory board for their input into the project. This research was supported by ANZUP Cancer Trials Group and by Register4 through its members’ participation in research.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Data availability statement
The data is available from the authors upon reasonable request.
Additional information
Funding
Notes on contributors
Jane M. Ussher
Jane Ussher, PhD, is Professor of Women’s Health Psychology, in the Translational Health Research Institute, and School of Medicine, Western Sydney University, Australia. Her research focuses on sexual and reproductive embodiment, and the gendered experience of cancer and cancer care. As a trained clinical psychologist, she has contributed to the integration of research and clinical practice in gendered health and has developed psycho-educational interventions in the field of cancer care, addressing sexual changes after cancer, fertility concerns, the needs of cancer carers, and LGBTQI+ cancer survivorship. She is editor of the Routledge Women and Psychology book series, and the journal Women’s Reproductive Health, Fellow of the British Psychological Society, and past President of the Australian Society of Psycho-social Obstetrics and Gynaecology (ASPOG) and the Society of Menstrual Cycle Research. She was awarded the Steven Grunberg Memorial Award, at the MASCC (Multinational Association of Supportive Care in Cancer) annual conference in 2019 for her research on gay and bisexual men’s experiences of prostate cancer. Jane is the lead investigator on the Out with Cancer Study, an ARC funded project examining LGBTQI experiences of cancer and cancer care.
Morgan Carpenter
Morgan Carpenter is a bioethicist and intersex human rights defender, with lived experience. He is a research affiliate in the University of Sydney School of Public Health, and a cofounder and executive director of Intersex Human Rights Australia. In 2023, Morgan’s “tireless work” was recognized by the Australian Capital Territory’s Chief Minister when introducing Australian-first legislation to protect the rights of people with innate variations of sex characteristics in medical settings. He has been named as a significant contributor to a 2021 Australian Human Rights Commission report on the health and human rights of people born with variations in characteristics. In 2013 he designed and shared the intersex flag, framed around concepts of bodily integrity and autonomy. He works nationally and internationally, including participation in the first expert meeting held by the UN on ending human rights violations against intersex persons. Morgan has been contracted to the Office of the High Commissioner for Human Rights, the Australian Capital Territory government and the Australian Institute of Health and Welfare. He is a reference or advisory group member for the Australian government’s Department of Health and Aged Care, the Australian Bureau of Statistics, and New South Wales Health.
Rosalie Power
Rosalie Power, PhD, is an Associate Research Fellow with the Translational Health Research Institute (THRI), Western Sydney University. Rosalie’s research focuses on LGBTQI health, disability and sexual health, utilizing qualitative methods. She is an Associate Editor of the journal Women’s Reproductive Health and a board member for the Australian Society for Psychosocial Obstetrics and Gynaecology (ASPOG). Rosalie served as a Research Associate on the Australian Research Council Linkage funded research project, The Out with Cancer Study, a four-year endeavour examining LGBTQI peoples experiences of cancer. The research informed the Cancer Council NSW 80-page information resource ‘LGBTQI+ Cancer’ which has been rolled out nationally; 13 information pages on the My Journey website for Breast Cancer Network Australia, collaboration with Canteen to develop resources for LGBTQI young people with cancer.
Samantha Ryan
Samantha Ryan, PhD is an Associate Research Fellow with the Translational Health Research Institute, Western Sydney University. Samantha’s research focus is within critical health psychology and women’s sexual and reproductive health. She is an Associate Editor of the journal Women’s Reproductive Health and a board member for the Australian Society for Psychosocial Obstetrics and Gynaecology (ASPOG). Her areas of research interest are premenstrual embodiment, body image and body management behaviours. In her research, Samantha utilizes mixed methodologies including quantitative, qualitative, and arts-based methods including body mapping. Samantha has worked across a range of projects exploring the health experiences of marginalized populations including LGBTQI, culturally and linguistically diverse and Aboriginal communities.
Kimberley Allison
Kimberley Allison, PhD is a Senior Research Officer at Canteen Australia and Western Sydney University. Their work explores how marginalized groups navigate dominant systems, with a focus on experiences of harassment and discrimination faced by young and LGBTQI+ people, particularly in healthcare, work and online contexts.
Bonnie Hart
Bonnie Hart is an intersex woman, peer worker and systemic advocate working with and within the intersex community improving access to affirmative, rights-based health and mental health services. Bonnie is the designer of InterLink, a peer-led and community-based intersex psychosocial support programme and is an original signatory of the Darlington Statement, an Aotearoa/New Zealand and Australian intersex community consensus statement. As an early career academic and PhD candidate at the University of Southern Queensland, Bonnie’s psychological research uses a critical intersex lens to address how people with intersex variations navigate complex psychological, social, legal, and medical issues to safely access affirmative healthcare and social services.
Alexandra Hawkey
Alex Hawkey, PhD, is an NHMRC Emerging Leadership Research Fellow who works at the intersection of critical public health and cultural enquiry to explore health inequities experienced by marginalized groups of people. Utilizing qualitative and arts-based methods her current areas of research include sexual violence against trans women of colour, LGBTQI cancer survivorship, workplace sexual harassment among LGBTQ youth and sexual and reproductive health among migrant and refugee women. She is an Associate Editor of the journal Women’s Reproductive Health and a board member for the Australian Society for Psychosocial Obstetrics and Gynaecology (ASPOG) and Society for Menstrual Cycle Research.
Janette Perz
Janette Perz, PhD is Professor of Psychology and Director of the Translational Health Research Institute at Western Sydney University. She researches in the field of reproductive and sexual health with a particular focus on gendered experiences, subjectivity and identity. She has undertaken a significant research programme in sexual and reproductive health including the experience of premenstrual syndrome (PMS) in heterosexual and lesbian relationships; the development of and evaluation of a couple-based psychological intervention for PMS; sexual wellbeing and reproductive needs in CALD populations; sexual and psychological wellbeing during menopause and midlife; sexual violence and trans women of colour; and LGBTQI cancer survivorship and care.
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