The Genetic Discrimination Observatory: confronting novel issues in genetic discrimination.

Genetic discrimination (GD) is the differential or unfair profiling of an individual on the basis of genetic data. This article summarizes the actions of the Genetic Discrimination Observatory (GDO) in addressing GD and recent developments in GD since late 2020. It shows how GD can take many forms in today's rapidly evolving society.

Parental concerns about genital differences in children with congenital adrenal hyperplasia persist regardless of the selected intervention.

BACKGROUND: Congenital Adrenal Hyperplasia (CAH) due to 21-hydroxylase deficiency (21HD) can affect the in utero development of the genital anatomy of people with the 46XX karyotype. Health professionals engage parents in decision-making regarding managing genitals with this difference, including genital surgery options and patient communication. AIM: We sought to investigate parental communication with their daughters regarding clitoral size variation related to neonatal CAH. METHODS: Semistructured in-person interviews of 24 parents of chromosomal XX children with clitoral size variation attributable to a neonatal CAH diagnosis comprised 3 management categories: (1) clitoral reduction surgery (RS) (7 parents, 9 children), (2) clitoral concealment surgery (CS) (8 parents, 8 children), and no surgery on or around the clitoris (NS) (9 parents, 7 children). OUTCOMES: Four representative themes, Obvious Choice, Still Different, Parental Burden, and Ignorance Is Bliss, were common across all 3 treatment groups. RESULTS: For most parents, none of the 3 options of genital appearance alteration via clitoral reduction, clitoral concealment surgery, or avoidance of clitoral surgery ameliorated concerns, with most parents expressing an aversion to educating their child on the topic of genital differences, past treatment, or future function. CLINICAL IMPLICATIONS: Reliance on surgical treatment pathways to manage this psychosocial concern is ineffective in alleviating parental uncertainty without the application of psychosocial interventions. STRENGTHS AND LIMITATIONS: This was a qualitative study but was limited to parents of children with a specific genital difference, without direct exploration of parental values regarding the clitoris or the application of adequate psychosocial care. CONCLUSION: Healthcare services must have an impact on parental ability to engage in essential communication with their children in cases such as clitoral size variation related to neonatal CAH. Improved communication skills allow parents to engage in more genuine decision-making and adapt to enduring genital reality, including possible future sexual challenges for their adult child, without resorting to burdensome strategies focused on attempts to perpetuate a benevolent ignorance.

Intersex Pretenders.

False claims of having an intersex condition have been observed in print, video, Internet media, and in live presentations. Claims of being intersexed in publicly accessible media were examined and evidence that they were false was considered sufficiently conclusive in 37 cases. Falsity was most often detected due to medical implausibility and/or inconsistency, but sometimes also using information from third-party or published sources. The majority, 26/37, of cases were natal males; 11/37 were natal females. Almost all (34/37) were transgendered, living, or aspiring to live, in their non-natal sex or as socially intergender. The most commonly claimed diagnosis was ovotesticular disorder ("true hermaphroditism") due to chimerism, an actually uncommon cause of authentic intersexuality. Motivations for pretending to be intersexed were inferred from statements and behaviors and were varied. Some such pretenders appear to be avoiding the external or internalized stigma of an actual transgendered condition. Some appear, similarly to persons with factitious disorder, to be seeking attention and/or the role of a sick, disadvantaged, or victimized person. Some showed evidence of paraphilia, most frequently autogynephilia, and, in several cases, paraphilic diaperism. For some cases, such claims had been accepted as authentic by journalists or social scientists and repeated as true in published material.

Sex Reassignment Surgery, Marriage, and Reproductive Rights of Intersex and Transgender People in Sunni Islam.

The traditional gender binary constitutes an integral aspect of Islamic social ethics, which has a pivotal role in shaping religious obligations, legal proceedings, and interpersonal judgments within Muslim communities. Within the familial sphere, this gender binary underscores fundamental responsibilities encompassing parenthood, filial duties, and inheritance rights. Recent years have witnessed a growing challenge to the traditional concept of the gender binary within Islamic societies. This shift is driven by increasing social libertarianism that emphasizes gender fluidity and individual choice. Hence, this article aims to critically scrutinize evolving discussions and controversies about the rights of intersex and transgender individuals, particularly issues relating to sex reassignment or gender-affirming surgery, marriage, and reproduction, from the perspective of the Sunni tradition of Islam. To support the various interpretations and insights presented here, a comprehensive and rigorous analysis is carried out on various religious texts and scholarly sources to elucidate the theological and jurisprudential positions on gender issues. It is thus concluded that Shariah offers greater flexibility in the treatment of intersex individuals compared to those with gender dysphoria because the intersex condition is viewed as a physical impairment that is not the choice of the afflicted individual. By contrast, in the case of individuals with gender dysphoria, they are willfully attempting to change their recognized biological sex, that God had naturally given to them at birth. Therefore, it is recommended that such transgender individuals deserve respectful psychological and social rehabilitation with help and guidance from religious authorities, their families, and communities.

Genital Modifications in Prepubescent Minors: When May Clinicians Ethically Proceed?

When is it ethically permissible for clinicians to surgically intervene into the genitals of a legal minor? We distinguish between voluntary and nonvoluntary procedures and focus on nonvoluntary procedures, specifically in prepubescent minors ("children"). We do not address procedures in adolescence or adulthood. With respect to children categorized as female at birth who have no apparent differences of sex development (i.e., non-intersex or "endosex" females) there is a near-universal ethical consensus in the Global North. This consensus holds that clinicians may not perform any nonvoluntary genital cutting or surgery, from "cosmetic" labiaplasty to medicalized ritual "pricking" of the vulva, insofar as the procedure is not strictly necessary to protect the child's physical health. All other motivations, including possible psychosocial, cultural, subjective-aesthetic, or prophylactic benefits as judged by doctors or parents, are seen as categorically inappropriate grounds for a clinician to proceed with a nonvoluntary genital procedure in this population. We argue that the main ethical reasons capable of supporting this consensus turn not on empirically contestable benefit-risk calculations, but on a fundamental concern to respect the child's privacy, bodily integrity, developing sexual boundaries, and (future) genital autonomy. We show that these ethical reasons are sound. However, as we argue, they do not only apply to endosex female children, but rather to all children regardless of sex characteristics, including those with intersex traits and endosex males. We conclude, therefore, that as a matter of justice, inclusivity, and gender equality in medical-ethical policy (we do not take a position as to criminal law), clinicians should not be permitted to perform any nonvoluntary genital cutting or surgery in prepubescent minors, irrespective of the latter's sex traits or gender assignment, unless urgently necessary to protect their physical health. By contrast, we suggest that voluntary surgeries in older individuals might, under certain conditions, permissibly be performed for a wider range of reasons, including reasons of self-identity or psychosocial well-being, in keeping with the circumstances, values, and explicit needs and preferences of the persons so concerned. Note: Because our position is tied to clinicians' widely accepted role-specific duties as medical practitioners within regulated healthcare systems, we do not consider genital procedures performed outside of a healthcare context (e.g., for religious reasons) or by persons other than licensed healthcare providers working in their professional capacity.

Arguments for a ban on pediatric intersex surgery: A dis/analogy with Jehovah witness blood transfusion.

This article argues for a ban on the performance of medically unnecessary genital normalizing surgeries as part of assigning a binary sex/gender to infants with intersex conditions on the basis of autonomy, regardless of etiology. It does this via a dis/analogy with the classic case in bioethics of Jehovah Witness (JW) parents' inability to refuse life-saving blood transfusions for their minor children. Both cases address ethical medical practice in situations where parents are making irreversible medical decisions on the basis of values strongly held, identity, and relationship-shaping values-such as religious beliefs or beliefs regarding the inherent value of binary sex/gender-amidst ethical pluralism. Furthermore, it takes seriously-as we must in the intersex case-that the restriction of parents' right to choose will likely result in serious harms to potentially large percentage of patients, their families, and their larger communities. I address the objection that parents' capacity to choose is restricted in the JW case on the basis of the harm principle or a duty to nonmaleficence, given that the result of parent choice would be death. I provide evidence that this is mistaken from how we treat epistemic uncertainty in the JW case and from cases in which clinicians are ethically obligated to restrict the autonomy of nonminor patients. I conclude that we restrict the parents' right to choose in the JW case-and should in the case of pediatric intersex surgery-to secure patient's future autonomy.

Enhancing intersex healthcare: A qualitative study of parental perspectives on the role of genetics.

Intersex individuals, encompassing people with diverse sex characteristics that do not fit binary frameworks of sex, have long faced a history of medical secrecy, discrimination, and societal stigma, contributing to their limited social visibility. In recent years, increased awareness of intersex issues and a robust advocacy movement have drawn significant attention to the experiences of intersex individuals and their families. This study contributes to the existing literature by examining the experiences and needs of parents of intersex individuals within genetic healthcare systems, bridging a critical gap, and advocating for more comprehensive and supportive healthcare practices. Semi-structured interviews were conducted with 14 parents of intersex individuals, and reflexive thematic analysis was used to inductively generate four major themes. Themes highlighted the need for improved accessibility of intersex healthcare, the importance of multidisciplinary healthcare teams, and the significance of clinical diagnosis provided by genetics professionals. Furthermore, the study highlighted the necessity of a thoughtful approach to information provision and the impact of genetic investigations on family dynamics. Genetics professionals can play a pivotal role in raising awareness about intersex variations, improving diagnostic processes, collaborating within healthcare teams, and providing specialized support to address psychosocial concerns. The study underscores the importance of treating families as a collective entity and addressing the impact of genetic investigations on the family unit. By addressing the challenges and implementing the recommendations outlined, healthcare institutions can create a more compassionate, inclusive, and effective healthcare environment for the intersex community.

Overview of gender-affirming surgery.

This publication will discuss the diversity of procedures that are common to those with intersex traits,/differences of sex development (I/DSD), and transgender and gender diverse (TGD) patients. It will address how these procedures are performed, and common after care and long-term considerations which are relevant to the pediatric radiologist. Some surgeries offered to these patient populations have shared surgical approaches and radiographic considerations. With the growth of TGD procedures as a field, more pediatric subspecialties are performing these procedures, and the approaches are informing the surgical care of the growing number of I/DSD individuals who are seeking surgery in adolescence and young adulthood. Surgeries discussed will include procedures to masculinize or feminize breast/chest tissue, facial bony contours, as well as internal and external genital structures. Patients are diverse and this includes their embodiment goals. As such, not all TGD and I/DSD patients will desire to undergo these procedures. It is important for radiologists to have a foundational understanding of this heterogenous set of procedures so they can provide optimal care for these patient populations.

Advocacy in gender affirming care.

Healthcare advocacy is the duty and privilege of all healthcare providers, but especially for those who care for children. Intersex and gender diverse youth face significant barriers across many aspects of life, with access to competent gender affirming healthcare chief among them. Understanding the importance of both institutional and individual efforts in healthcare advocacy is paramount to improving healthcare access and outcomes for this population.

Peri-surgical imaging of intersex and gender diverse youths.

This publication provides an overview of current imaging indications and practices for patients undergoing gender-affirming surgery, with an emphasis on the importance of tailored, patient-specific care. Gender-affirming surgeries are performed with personalized approaches at various stages of life for those with intersex traits or differences in sex development (I/DSD) and transgender and gender diverse (TGD) individuals. For I/DSD patients, ultrasound, genitography, or MRI occurs during infancy and puberty to evaluate genital and gonadal anatomy. Facial harmonization involves bony and soft tissue modifications, guided by maxillofacial computerized tomography (CT) with three-dimensional reconstruction. Ultrasound is the main modality in assessing hormone-related and post-surgical changes in the chest. Imaging for genital reconstruction uses cross-sectional images and fluoroscopy to assess neoanatomy and complications.

Evaluation and medical care of intersex and gender diverse youth.

While there is considerable overlap in the treatment of patients with intersex traits and differences in sex development (I/DSD) with transgender and gender diverse (TGD) youth, the initial medical evaluation varies significantly. I/DSD youth often present due to differences in genitalia development in infancy or pubertal development in adolescence, and this leads to comprehensive biochemical, radiologic, and genetic evaluation. TGD youth, however, tend to have typical development noted at birth and during puberty, but present with a gender identity that does not align with their sex assigned at birth and do not require evaluation for underlying pathology. For both I/DSD and TGD youth, the mainstays of treatment are to better align one's physical appearance to their gender identity. This review discusses the non-medical and medical interventions utilized in gender affirming care. A multidisciplinary team of mental health providers, pediatric medical providers, and surgeons is recommended for providing gender affirming care to both I/DSD youth and TGD youth and their families. Radiologists have an important role in initial evaluation of I/DSD youth and in ongoing monitoring of growth and bone mineral density during puberty induction in I/DSD and TGD youth.

Navigating the complexities of adult healthcare for individuals with variations of sex characteristics: from paediatric emergencies to a sense of abandonment.

Intersex people and those with variations of sex characteristics face significant health and social issues. This paper analyses the complexities of adult healthcare for this diverse population, including the root causes of deficiencies in care provision. Many minors with variations of sex characteristics are subjected to irreversible, non-consensual medical interventions, which can have negative effects on their health and wellbeing as adults. This 'emergency' approach to intersex paediatric healthcare has been challenged since the 1990s, but there is still a lack of understanding about how the paradigm affects adult care. This paper aims to raise awareness of the health challenges faced by adults with variations of sex characteristics. It identifies themes related to the challenges associated with accessing appropriate adult care, including the repercussions of childhood treatment, the lack of transitional services and psychological support, the limited general medical knowledge about variations of sex characteristics, and the reluctance to access services due to fear of stigma or past medical trauma. The paper indicates the need for more attention to intersex people's health needs as adults, moving away from attempts to 'fix' them as minors towards approaches which consider and provide for their diverse healthcare needs in a broader temporal context.

Distinct developmental mechanisms influence sexual dimorphisms in the milkweed bug Oncopeltus fasciatus.

Sexual dimorphism is common in animals. The most complete model of sex determination comes from Drosophila melanogaster, where the relative dosage of autosomes and X chromosomes leads indirectly to sex-specific transcripts of doublesex (dsx). Female Dsx interacts with a mediator complex protein encoded by intersex (ix) to activate female development. In males, the transcription factor encoded by fruitless (fru) promotes male-specific behaviour. The genetics of sex determination have been examined in a small number of other insects, yet several questions remain about the plesiomorphic state. Is dsx required for female and male development? Is fru conserved in male behaviour or morphology? Are other components such as ix functionally conserved? To address these questions, we report expression and functional tests of dsx, ix and fru in the hemipteran Oncopeltus fasciatus, characterizing three sexual dimorphisms. dsx prevents ix phenotypes in all sexes and dimorphic traits in the milkweed bug. ix and fru are expressed across the body, in females and males. fru and ix also affect the genitalia of both sexes, but have effects limited to different dimorphic structures in different sexes. These results reveal roles for ix and fru distinct from other insects, and demonstrate distinct development mechanisms in different sexually dimorphic structures.

Working towards convergence of the clinical management of differences of sex development/intersex conditions and the human rights framework: A case study.

OBJECTIVE: Medical treatments that aim to modify the appearance of the genitals in children who are born with a difference of sex development/intersex (DSD/I*) condition are highly controversial. Human Rights bodies worldwide have argued that such treatments are conflicting with the child's right of personal autonomy and should be legally restricted to the unique situation where the child's physical health is in danger. DESIGN: We here review the current status of legal initiatives in Europe that have addressed the issue of medical treatments in minors who have a DSD for which they have not been able to give personal informed consent due to their young age. PATIENTS: The management of a 3 years old child who has congenital adrenal hyperplasia (CAH) and grows up with atypical-looking genitals is discussed. RESULTS: In spite of extensive psychosocial support to the child and family from birth onwards, and good medical control of CAH, the child develops signs of emotional distress, suspected to be attributable to the genital difference. Our discussions include perspectives from the multidisciplinary DSD team caring for the child, a human rights specialist, and an intersex activist. From our discussions, we conclude that with evolving medical care, new ethical and human rights challenges are raised. A truly holistic human rights approach should not only consider physical but also mental health and psychosocial and psychosexual adaptation of the child to the medical condition, when reflecting on the acceptability of medical treatments in minors for which no personal informed consent can be obtained due to their young age. In addition it is paramount to include the meaningful participation of the child in the clinical management at the earliest possible stage. CONCLUSIONS: Continued convergence of clinical management and the human rights framework can be realised based on constructive discussions involving all stakeholders, and with the best interest of the child - and adult that they will become - as a common goal.

Medical Mistrust Mediates the Relationship Between Nonconsensual Intersex Surgery and Healthcare Avoidance Among Intersex Adults.

BACKGROUND: Intersex individuals experience poor health due, in part, to healthcare avoidance. Nonconsensual intersex surgery may contribute to medical mistrust and avoidance among intersex populations. PURPOSE: The purpose of this study was to explore the relationship between nonconsensual surgery and healthcare avoidance among intersex populations and to examine if medical mistrust mediates this relationship. METHODS: Data for this cross-sectional study were collected in 2018 and analyzed in 2022. Participants completed a survey collecting information on demographics, medical mistrust, history of nonconsensual surgery, and history of postponing healthcare. One hundred nine participants with valid responses to all regression model variables were included in the study. Multivariable logistic regression models controlling for age, race, and income, examined the relationship between nonconsensual surgery and postponing preventive and emergency healthcare. Mediation analyses of cross-sectional data examined whether medical mistrust mediated the relationship between nonconsensual surgery and postponing preventive and emergency healthcare. RESULTS: Mean medical mistrust score was 2.8 (range = 1-4; standard deviation = 0.8), 49.7% of participants had nonconsensual surgery in their lifetime, 45.9% postponed emergency healthcare, and 61.5% postponed preventive healthcare in their lifetime. Nonconsensual surgery was associated with increased odds of delaying preventive (adjusted odds ratio [AOR] = 4.17; confidence interval [CI] = 1.76-9.88; p = .016) and emergency healthcare (AOR = 4.26; CI = 1.71-10.59; p = .002). Medical mistrust mediated the relationship between nonconsensual surgery and delaying preventive (indirect effect = 1.78; CI = 1.16-3.67) and emergency healthcare (indirect effect = 1.66; CI = 1.04-3.30). CONCLUSIONS: Nonconsensual surgery contributed to healthcare avoidance in this intersex population by increasing medical mistrust. To decrease healthcare avoidance, intersex health promotion interventions should restrict nonconsensual surgery and build trust through trauma-informed care.

Many intersex people experience nonconsensual surgery during childhood to alter their genitalia and other anatomy. Some intersex people who have experienced nonconsensual surgery develop subsequent mistrust in medical providers and avoidance of healthcare. The purpose of this study was to understand the relationship between nonconsensual surgery and delay in emergency and preventive healthcare among intersex adults. Additionally, this study aimed to understand whether mistrust in medical providers mediates the relationship between nonconsensual surgery and delaying emergency and preventive healthcare. This study found that ever having nonconsensual surgery was positively associated with delaying both emergency and preventive healthcare among intersex adults. Additionally, this study found that increased mistrust in medical providers mediated the relationship between nonconsensual surgery and delaying emergency and preventive healthcare. Interventions aimed at improving the healthcare engagement of intersex adults may focus on building trust between intersex patients and healthcare providers and restricting nonconsensual intersex surgeries.

Endocrine Disruption Is Reduced but Still Widespread in Wild Roach (Rutilus rutilus) Living in English Rivers.

Endocrine disruption of wild fish, primarily resulting in the feminization of males, has been reported in English river sites for several decades. Estrogenic activity emanating from wastewater treatment works (WwTW) has been conclusively demonstrated to be the main driver of these feminized phenotypes. Here, we revisit 10 English river sites previously surveyed in the late 1990s and early 2000s to assess how the frequency and severity of feminization now compare with the historical surveys. In the contemporary assessment, 60% of the sites revisited still showed endocrine disruption at the tissue organization level (oocytes present in otherwise male gonads; intersex) and 90% of sites had average male plasma vitellogenin concentrations (female-specific yolk protein; a sensitive biomarker of estrogen exposure) above natural baseline levels. In contrast to the historic surveys, none of the males sampled in the contemporary survey had ovarian cavities. At one of the larger WwTW, improvements to treatment technology may have driven a significant reduction in intersex induction, whereas at several of the smaller WwTW sites, the frequencies of feminization did not differ from those observed in the late 1990s. In conclusion, we show that although the severity of feminization is now reduced at many of the revisited sites, endocrine-disrupting chemicals are still impacting wild fish living downstream of WwTW in England.

How to Ensure Inclusivity in Large-Scale General Population Cohort Studies? Lessons Learned with Regard to Including and Assessing Sex, Gender, and Sexual Orientation.

Despite recent advances in the measurement of sex, gender, and sexual orientation in large-scale cohort studies, the three concepts are still gaining relatively little attention, may be mistakenly equated, or non-informatively operationalized. The resulting imprecise or lacking information hereon in studies is problematic, as sex, gender, and sexual orientation are important health-related factors. Omission of these concepts from general population cohort studies might dismiss participants' identity and experiences and pushes research on sexual or gender minority populations toward purposive sampling, potentially introducing selection bias. It also reinforces the unintentional notion of irrelevance of these concepts to health research, ultimately disadvantaging sexual and gender minority populations. Similarly, a lack of uniform measures on sex, gender, and sexual orientation hampers multi-cohort studies in which data from multiple studies are combined, facilitating increased statistical power. This paper discusses the encountered pitfalls and lessons learned on including and assessing sex, gender, and sexual orientation in large-scale general population cohort studies, exemplified by the Dutch Lifelines Cohort Study. Additionally, we propose hands-on strategies on how to operationalize these concepts in an inclusive manner that is useful for large-scale general population cohort studies.

Mixed Study Systematic Review and Meta-analysis of Sexuality and Sexual Rehabilitation in LGBTQI+ Adults Living With Chronic Disease.

OBJECTIVE: To systematically review how sexuality is experienced by lesbian, gay, bisexual, transgender, queer or questioning, intersex plus (other gender identifies and sexual orientations) (LGBTQI+) persons living with chronic disease. DATA SOURCES: PsycINFO, Embase, MEDLINE, Scopus, Cumulative Index to Nursing and Allied Health, and Web of Science were searched from date of inception to November 2021 for English language publications. Reference lists of relevant publications were also searched. STUDY SELECTION: Eligible studies reported on sexuality among LGBTQI+ persons living with chronic disease. The search yielded 12,626 records; 665 full texts were assessed for eligibility and 63 documents included (59 unique studies). Study quality was rated using the Mixed Methods Appraisal Tool. DATA EXTRACTION: Characteristics of included studies were recorded independently by 2 authors. Differences were resolved through discussion or with a third author. DATA SYNTHESIS: A sequential, exploratory mixed-studies approach was used for synthesis. Pooled analysis indicated that among gay and bisexual men living with prostate cancer, 68.3% experienced erectile dysfunction and 62.9% had insufficient quality of erection to engage in anal sex. Among gay and bisexual men living with HIV or AIDS, 29.3% experienced loss of libido and 25.3% experienced erectile dysfunction. Although sexual dysfunction was common, LGBTQI+ persons had difficulty accessing appropriate sexual counseling and identified negative attitudes and heteronormative assumptions by health care providers as significant barriers to sexual health. Interventions to address sexuality focused entirely on reduction of risky sexual behavior among men living with HIV or AIDS. Women, transgender persons, and intersex persons were largely excluded from the research studies. CONCLUSIONS: Current understandings of the effect of chronic disease on LGBTQI+ sexuality are limited and mostly focus on the male sexual response. LGBTQI+ persons who experience difficulty with sexuality struggle to identify appropriate services, and there is an absence of evidence-based interventions to promote sexual health and well-being in this population.

Beyond Suppressing Testosterone: A Categorical System to Achieve a "Level Playing Field" in Sport.

Regulations implemented by World Athletics (WA) require female athletes with differences of sexual development to suppress their blood testosterone levels in order to participate in certain women's sporting competitions. These regulations have been justified by reference to fairness. In this paper, we reconstruct WA's understanding of fairness, which requires a "level playing field" where no athlete should have a significant performance advantage based on factors other than talent, dedication, and hard work over an average athlete in their category. We demonstrate that by placing regulations only on testosterone levels, while ignoring physical as well as socioeconomic advantages, WA consistently fails to meet its own definition of fairness. We then discuss several ways in which this definition could be met. Our analysis shows that a categorical system, in which athletes are divided into categories based on properties leading to significant performance advantages, is best suited for meeting WA's definition of fairness.

Theorising health equity research for people with intersex variance through new materialism.

Health inequalities impact sex-variant people in highly differentiated ways. This is evidenced in much academic and activist intersex research documenting the highly specific forms of inequalities arising from misrecognition, discrimination and human rights abuses inherent to pathologised accounts of non-normative bodies. Important theoretical work further interrogates the implications of sex variant subjectivities, identities and bodies for static or binary notions of both sex and gender. In this paper, we aim to contribute further to this scholarship. We draw upon feminist materialist and Deleuzean-informed understandings of materials or matter to rethink debates over sex-variant subjectivities, identities and bodies in relation to inequalities in health. We argue 'the turn to matter' and associated new materialist theories draw attention to the complex, dynamic relational assemblages and entanglements mutually constituting the affective, embodied and socio-material worlds of intersex people. Informed by these theories, we propose that inequalities can be more fully addressed through a new health equity research agenda that is co-produced with sex-variant people. This agenda will enable a fuller exploration of the unsettling but transformative capacities of intersex matters and meanings with the contextually specific understandings of equity in relation to health and health care.