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

I present the notion of epistemic injustice coined by Miranda Fricker and apply it to the situation of people with intersex traits, especially intersex children who are the subjects of “normalizing” surgery. Several studies from Polish hospitals show that both early “normalizing” surgery and the decision to postpone such surgery can result in harm to an intersex child. For this reason, I claim that “normalizing” surgery is only an expression of the epistemic hermeneutical injustice existing before the surgery and that (...) its source is the lack of an empirically adequate notion of sex characteristics. The binary notion is too simple to grasp intersex traits, and this epistemic dysfunction turns into practical harm. In contrast to Morgan Carpenter, I defend the nonbinary gender category as being important to limiting “normalizing” surgery. (shrink)

Ritual circumcision of infant boys is controversial in Norway, as in many other countries. The procedure became a part of Norwegian public health services in 2015. A new law opened for conscientious objection to the procedure. We have studied physicians’ refusals to perform ritual circumcision as an issue of professional ethics. Qualitative interview study with 10 urologists who refused to perform ritual circumcision from six Norwegian public hospitals. Interviews were recorded and transcribed, then analysed with systematic text condensation, a qualitative (...) analysis framework. The physicians are unanimous in grounding their opposition to the procedure in professional standards and norms, based on fundamental tenets of professional ethics. While there is homogeneity in the group when it comes to this reasoning, there are significant variations as to how deeply the matter touches the urologists on a personal level. About half of them connect their stance to their personal integrity, and state that performing the procedure would go against their conscience and lead to pangs of conscience. It is argued that professional moral norms sometimes might become more or less ‘integrated’ in the professional’s core moral values and moral identity. If this is the case, then the distinction between conscience-based and professional refusals to certain healthcare services cannot be drawn as sharply as it has been. (shrink)

Medically unnecessary penile circumcision (MUPC) performed on a non-consenting child has been the subject of increasing critical attention in recent years. This paper provides a behind-the-scenes narrative of the politics of ethical policymaking in the United Kingdom in this area including a discussion about some potential barriers to reform. After a brief overview of ethical guidance for medically unnecessary surgical procedures on children in general and on their genitalia in particular, the paper takes a closer look at three contemporary documents (...) released by UK medical bodies and highlights the unique ethical and safeguarding contradictions in this area. The outcomes of initiatives aimed at engaging constructively with the medical bodies and encouraging wider debate are then described, along with some of the main obstacles to engagement and counter-arguments employed. MUPC is subsequently discussed in a wider societal context, highlighting why serious safeguarding concerns have been raised about what many people believe to be a harmful, preventable practice hiding ‘in plain sight’. The paper ends by calling for UK MUPC guidance to be made consistent with the body of guidance that UK doctors are expected to follow. (shrink)

The current legal status and medical ethics of routine or religious penile circumcision of minors is a matter of ongoing controversy in many countries. We focus on the United Kingdom as an illustrative example, giving a detailed analysis of the most recent British Medical Association guidance from 2019. We argue that the guidance paints a confused and conflicting portrait of the law and ethics of the procedure in the UK context, reflecting deeper, unresolved moral and legal tensions surrounding child genital (...) cutting practices more generally. Of particular note is a lack of clarity around how to apply the “best interests” standard—ordinarily associated with time-sensitive proxy decision making regarding therapeutic options for a medically unwell patient—to a parental request for a medically unnecessary surgery to be carried out on the genitalia of a healthy child. Challenges arise in measuring and assigning weights to intended sociocultural or religious/spiritual benefits, and even to health-related prophylactic benefits, and in balancing these against potential physical, functional, and psychosexual risks or harms. Also of concern are apparently inconsistent safeguarding standards being applied to children based on their birth sex categorization or gender of rearing. We identify and discuss recent trends in British and international medical ethics and law, finding gradual movement toward a more unified standard for evaluating the permissibility of surgically modifying healthy children's genitals before they can meaningfully participate in the decision. (shrink)

The concept of medical necessity is often used to explain or justify certain decisions—for example, which treatments should be allowed under certain conditions—as though it had an obvious, agreed-upon meaning as well as an inherent normative force. In introducing this special issue of Clinical Ethics on medical necessity, we argue that the term, as used in various discourses, generally lacks a definition that is clear, non-circular, conceptually plausible, and fit for purpose. We propose that future work on this concept should (...) address three main questions: what medical necessity is (i.e., what makes something medically necessary, as opposed to something else); what the concept does (what ‘work’ is it doing when invoked in different settings); and what should follow, normatively, from the fact that something is indeed medically necessary (on some plausible conception). (shrink)

This issue considers the ethics of a healthcare provider intervening into a patient’s genitalia, whether by means of cutting or surgery or by ‘mere’ touching/examination. Authors argue that the permissibility of such actions in the absence of a relevant medical emergency does not primarily turn on third-party judgments of expected levels of physical harm versus benefit, or on related notions such as extensiveness or invasiveness; rather, it turns on the patient’s own consent. To bolster this argument, attention is drawn to (...) the status of the genitals as ‘intimate’ anatomy—a status that is not fully erased by being in a medical context. In this editorial, we draw on the work of Talia Mae Bettcher on ‘intimate agency’ to explore why unconsented interventions into the genitalia may constitute a distinctive sort of personal violation compared to unconsented contact with various other parts of the human body. In their feature article, Marit van der Pijl and colleagues1 argue it is unethical for healthcare providers to perform unconsented episiotomies on persons in labour. In particular, they suggest that, outside of certain rare emergencies in which, for example, the person giving birth is incapacitated1 and the procedure cannot be delayed until consent becomes possible without introducing a significant risk of serious harm (call these ‘medically necessary’2 procedures), ‘presumed consent’ is the incorrect standard to apply. Instead, they stress that, especially when a proposed intervention involves a person’s genital, sexual or reproductive organs, the need to obtain their explicit consent in advance of proceeding must be honoured. As the authors note, the broader social significance of our genitalia—widely regarded as ‘private’ anatomy—is not erased by being in a medical context (see also 2–4). Boundaries must still be observed. Ethically, this ‘leaves a very small margin for error because invasion of these body parts …. (shrink)

The WHO, American Academy of Pediatrics and other Western medical bodies currently maintain that all medically unnecessary female genital cutting of minors is categorically a human rights violation, while either tolerating or actively endorsing medically unnecessary male genital cutting of minors, especially in the form of penile circumcision. Given that some forms of female genital cutting, such as ritual pricking or nicking of the clitoral hood, are less severe than penile circumcision, yet are often performed within the same families for (...) similar reasons, it may seem that there is an unjust double standard. Against this view, it is sometimes claimed that while female genital cutting has ‘no health benefits’, male genital cutting has at least some. Is that really the case? And if it is the case, can it justify the disparate treatment of children with different sex characteristics when it comes to protecting their genital integrity? I argue that, even if one accepts the health claims that are sometimes raised in this context, they cannot justify such disparate treatment. Rather, children of all sexes and genders have an equal right to bodily autonomy. This includes the right to decide whether their own ‘private’ anatomy should be exposed to surgical risk, much less permanently altered, for reasons they themselves endorse when they are sufficiently mature. (shrink)

Individuals with intersex variations fall outside the normative sex binary of male and female for various reasons. These individuals are highly stigmatized and discriminated against in the legal, medical and social spheres. In this paper, we analyze manifestations of such discrimination in the healthcare context and hypothesize that Patient Centred Care and Shared Decision Making approaches are improperly practiced with intersex individuals. Through a narrative review of current literature, we present evidence of improper practice of PCC and SDM and its (...) effects on intersex individuals and, in the pediatric context, their parents. Misinformation by medical practitioners to parents of intersex individuals promotes the perpetuation of unnecessary surgical interventions. We propose strategies to improve intersex medical care, including better adherence to SDM and PCC guidelines as well as the sociocultural normalisation of intersex identity. Current perceptions of surgical interventions done on intersex infants and children need to better align with evidence-based physical and psychological health risks. All these strategies are part of preserving the autonomy and physical integrity of intersex individuals and ensuring that their well-being remains at the heart of their care in the medical context. (shrink)