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. (shrink)

The paper offers a critical response to the proposed “dis/analogy” between the restriction of Jehovah's Witness parental right to refuse life‐saving blood transfusions for their minor children and a “general” and “permanent” ban on “unnecessary” pediatric intersex surgery. The main argument of the analogy is “securing the patient's future autonomy.” Feinberg's theory of rights is used to demonstrate that the proposed analogy is untenable. A new category of developmental rights‐in‐trust is introduced to address specific needs of gender (...) development in DSD situations. Both premises are disputed. First, it is shown that the case of overriding Jehovah's Witness parental rights is not based on securing the patient's future autonomy, but a simple dependency right in Feinberg's theory. Second, it is demonstrated that pediatric intersex surgery is not in the same situation in all morally relevant respects as the Jehovah's Witness case because it represents a special type of developmental right‐in‐trust. In conclusion, the arguments based on the proposed analogy do not justify a “general and permanent” on pediatric intersex surgery. (shrink)

Intersex pediatric surgery is a family of surgical practices performed by pediatric urologists which aim to clarify the sex of an individual with differences/disorders of sexual development, specifically those with ‘intersex’ conditions. It aims to functionally and aesthetically disambiguate an individuals’ binary sex that is obscured by intersex conditions. I ethically reassess intersex pediatric surgery in light of contemporary biotechnology, formal specialization in pediatric urology and long-term data on the efficacy (...) of intersex pediatric surgery, finding that there are only select contexts in which intersex pediatric surgery is morally justifiable. I develop novel, operationalizable and testimonially-informed moral criteria to regulate intersex pediatric surgery, working out the details for how medical professionals in pediatric healthcare facilities are best able to facilitate and augment the decision-making of parents as they decide whether intersex pediatric surgery is in the best interests of their child with intersex conditions. (shrink)

Rashad Rehman calls for the bioethical community to help contribute conceptual clarity to the debate about the ethics of intersex pediatric surgery.

This paper argues that Canada is not ready to place a moratorium against intersex pediatric surgery.

This article discusses the ethics of the use of preimplantation genetic diagnosis to prevent the birth of children with intersex conditions/disorders of sex development , such as congenital adrenal hyperplasia and androgen insensitivity syndrome . While pediatric surgeries performed on children with ambiguous genitalia have been the topic of intense bioethical controversy, there has been almost no discussion to date of the ethics of the use of PGD to reduce the prevalence of these conditions. I suggest that PGD (...) for those conditions that involve serious medical risks for those born with them is morally permissible and that PGD for other “cosmetic” variations in sexual anatomy is more defensible than might first appear. However, importantly, the arguments that establish the latter claim have radical and disturbing implications for our attitude toward diversity more generally. (shrink)

Many people, communities and countries are in favour of abortion as a healthcare right, arguing that women have a right to receive an abortion upon request. Some contexts place ethical constraints on this right, typically based on the age of the preborn child, the mother’s safety, or the circumstances of the mother (and her conceiving of her child) more generally. At the same time, intersex pediatric surgery (IPS) is being increasingly ethically challenged with many countries banning healthcare (...) facilities from performing IPS. At first, there appears to be no relation between these two ethical issues. However, modern biotechnology such as the assistive reproductive technology (ART), preimplantation genetic diagnosis (PGD), makes it possible to screen for intersex conditions in utero, opening the possibility of intersex-selective abortion (ISA), a sub-set or instance of sex-selective abortion (SSA). What emerges is the realization that if IPS is wrong because, as its critics have argued, it wrongfully discriminates against and harms intersex lives, then ISA is much more wrong because instead of misvaluing intersex lives, it devalues intersex lives altogether. In other words, IPS might, as some have argued, discriminate by implying that an intersex child is better off being male or female but not intersex, but ISA discriminates by implying that an intersex child is better off not existing at all. Some have recognized this connection and have vainly tried to maintain both their pro-abortion commitments and their anti-IPS commitments. This has proved at best duplicitous, and at worst conceptually impossible. While it is known that a strong stance against IPS results in an inability to morally condemn ISA, with one notable exception in moral theology, this connection has not been generally appreciated. (shrink)

When a group of doctors and nurses from Boston, Massachusetts, provided evaluation and heart surgery to children in Ghana, they encountered three rationing dilemmas: (1) What portion of surgery slots should they reserve for the simplest, most cost-effective surgeries? (2) How much time should be reserved for especially simple, nonsurgical interventions? (3) How much time should be reserved to training local staff to perform such surgeries? This article investigates these three dilemmas.

Despite the reported limited success of conventional treatments and growing evidence of the effectiveness of adult bariatric surgery, weight loss operations for (morbidly) obese children and adolescents are still considered to be controversial by health care professionals and lay people alike. This paper describes an explorative, qualitative study involving obesity specialists, morbidly obese adolescents, and parents and identifies attitudes and normative beliefs regarding pediatric bariatric surgery. Views on the etiology of obesity—whether it should be considered primarily a (...) medical condition or more a psychosocial problem—seem to affect the specialists’ normative opinions concerning the acceptability of bariatric procedures as a treatment option, the parents’ feelings regarding both being able to influence their child’s health and their child being able to control their own condition, and the adolescents’ sense of competence and motivation for treatment. Moreover, parents and adolescents who saw obesity as something that they could influence themselves were more in favor of non-surgical treatment and vice versa. Conflicting attitudes and normative views—e.g., with regard to concepts of disease, personal influence on health, motivation, and the possibility of a careful informed consent procedure—play an important role in the acceptability of bariatric surgery for childhood obesity. (shrink)

La historia de la Cirugía Pediátrica cubana está pendiente de ser documentada científicamente. Se estableció como objetivo definir las etapas de desarrollo de la especialidad en Cuba, para lo cual se hizo un análisis histórico y se identificó cuatro períodos fundamentales. Este artículo tiene una significación práctica puesto que permite conocer en qué momento se encuentra la especialidad para modelar el futuro de la misma. The history of Cuban pediatric surgery is pending of being scientifically documented. It was (...) established as an objective to define the stages of the development of the specialty in Cuba. For this purpose a historical analysis was carried out and four main periods were identified. This study has a practical importance because it allows knowing the stage in which the specialty is to model its future. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:A Changed Life: Becoming True to Who I amJay Kyle PetersenI was born intersex in 1952 in the county hospital of a very small, ultraconservative town in rural Southwestern Minnesota. My biological parents and paternal grandparents raised me on a small family farm nearby. I knew by age four I was a boy. No one told me. There was nothing to decide. I have always known I am (...) male. My parents never discussed my unusual condition with me and died having never accepted me. They denied my true identity and instead chose to give me a girl’s name and raise me as a girl.My paternal grandmother knew I was different. She lived on the farm with us and, as she explained to me later on in life, changed my diapers and helped take care of me as an infant and toddler. She also was a Certified Nurse’s Aide in the pediatric ward of the county hospital where I was born and could see that anatomically I was different from other infants. She remained my lifelong ally and friend until her death in 1993. She and Grandpa provided an oasis in their farmhouse where I felt accepted. I felt relaxed and comfortable in their company, and could just be myself. Grandpa took me fishing. Grandma drove me to 4–H State Fair demonstrations and supported me in the audience for which she had helped prepare me. My grandmother taught me good humor, excellence and how it was okay to make mistakes. Much later, in 1977, she drove four hours alone to Minneapolis in blizzard conditions to be my “concerned family person” during chemical dependency treatment, when my mother and dad refused and she also celebrated with me after my successful completion of the program. I loved her and she loved me and she showed it. With her I found refuge away from the pressure and abuse in our farmhouse.But my grandparents and parents did not show me affection physically. The only touch I felt from my family, except my paternal grandparents, was abusive including certain religious figures outside our family. Farm animals and pets provided warmth, love, acceptance, and companionship. I loved riding around the farm on the back of my pet pig, Lucy. Nature, especially trees, wild weather, and local lakes provided rest for my stretched, weary nerves and stimulation for my imagination. There was something about the vivid and contrasting colors, even the sounds and livingness about it all—rich deep moist greens, clean pure vast open blues, dark warm earth which I laid upon and felt in my hands. These and the soothing sounds of the wind gently moving through tree leaves and corn leaves and the lake water lapping calmly upon sandy shores, as Grandpa cast out his line: all this I found both relaxing and energizing and allowed for me the safety and environment to rest, let go and expand so my natural inclinations to express myself creatively could open up. Otherwise, I had a very lonely, frustrated, painful, humiliating childhood and adolescence filled with mounting anger and a sense of futility because I could not be or express my real male self—including my attraction to girls.The cultural and religious pressure I felt, the increased abuse and social lies I was forced to live with—including being forced to wear girls’ clothing against my will—became unbearable. I sought [End Page 106] refuge in addiction early on—food for comfort, nicotine for mood alteration, alcohol given to me by my dad, and more. I became suicidal, and remained for a long time terribly depressed.The geneticist I have consulted for the last four years says that physicians who examined me prior to my genital surgeries described my genitals as “male structures formed without enough testosterone,” rather than female structures formed in the presence of excess androgen. She told me that the features recorded in my medical records, and that she had observed, indicate androgen exposure in utero along with an inherited genetic condition such that she says my condition began at conception. I was born with XX karyotype and testing for usual causes for androgen excess with someone... (shrink)

Within the context of global health development approaches, surgical missions to provide care for underserved populations remain the least studied interventions with regard to their methodology. Because of the unique logistical needs of delivering operative care, surgical missions are often described solely in terms of cases performed, with a paucity of discourse on medical ethics. Within surgery, subspecialties that serve patients on a non-elective basis should, it could be argued, create mission strategies that involve a didactic approach and the (...) propagation of sustainable surgical care. The ethical considerations have yet to be described for paediatric neurosurgical outreach missions. We present here the perspectives of neurosurgeons who have participated in surgical outreach missions in Central America, South America, Eastern Europe and sub-Saharan Africa from the vantage point of both the visiting mission team and the host team that accommodates the mission efforts. (shrink)

Clinical ethics has been developing in paediatric healthcare for several decades. However, information about how paediatricians use clinical ethics case consultation services is extremely limited. In this project, we analysed a large set of case records from the clinical ethics service of one paediatric hospital in Australia. We applied a paediatric-specific typology to the case referrals, based on the triadic doctor–patient–parent relationship. We reviewed the 184 cases referred to the service in the period 2005–2014, noting features including the type of (...) case, the referring department(s) and the patient9s age at referral. The two most common types of referral involved clinician uncertainty about the appropriate care pathway for the child (26% of total referrals) and situations where the child9s parents disagreed with the doctors’ recommendations for the child9s care (22% of total referrals). Referrals came from 28 different departments. Cancer, cardiology/cardiac surgery and general medicine referred the highest numbers of cases. The most common patient age groups were children under 1, and 14–15 years old. For three controversial areas of paediatric healthcare, clinicians had initiated processes of routine review of cases by the clinical ethics service. These insights into the way in which one very active paediatric clinical ethics service is used further our understanding of the work of paediatric clinical ethics, particularly the kinds of ethically challenging cases that paediatricians view as appropriate to refer for clinical ethics support. (shrink)

Background Surgery for intersex infants should be delayed until individuals are able to decide for themselves, except where it is a medical necessity. In an ideal world, this single principle would suffice and such surgeries could be totally prohibited. Unfortunately, the world is not perfect, and, in some places, intersex neonates are at risk of being abandoned, mutilated or even killed. As long as intersex persons are at such high risk in some places, any ethical guidelines (...) for intersex surgeries will need to take these extreme risks of harm into account. Main text I therefore argue for five basic principles that ought to inform ethics guidelines for surgical interventions in intersex children, specifically in contexts in which such children are at risk of significant harm. What I set out to come up with is a set of principles that do not completely prohibit surgery, but only allow it where a strong case can be made for its necessity, in the best interests of the child, and where there is some kind of oversight to prevent misuse. The first principle is that interventions as drastic as these surgeries should only be performed when there is strong evidence that they are beneficial and not harmful. The second principle is that in surgeries should normally only be performed in cases of true medical necessity. Principle three is that surgeries should normally be delayed until such time as the intersex person is mature enough to assent to treatment or decide against it. Principle four is that the conventional ethical requirements regarding truth telling apply equally to intersex children as to anyone else. The final principle is that where physicians or parents think that surgery is in the best interests of the child, the burden of proof lies with them. Conclusion It is hoped that these principles might help medical teams and parents make better decisions about intersex surgeries on children, and they would make such surgeries very rare indeed, if they happen at all. (shrink)

This paper advances a novel conception of the child’s best interest in regard to pediatric surgeries that do not promote the preventive or therapeutic health needs of children, or elective pediatric surgeries (EPS). First, children’s capacity for decision-making is examined, and the best decision-making model for EPS is identified as the Best Interest Standard. What follows is a discussion of the interests of children in the context of EPS, the correlation of fundamental interests to rights, and guidelines for (...) weighing children’s competing interests. Next, the rights and duties of parents as proxy decision makers are considered. Finally, a reinterpretation of the Best Interest Standard is proposed, identifying as paramount a child’s ability to make elective medical decisions for herself when she reaches maturity. (shrink)

Few parents-to-be consider that their child may be born with ambiguous sex. Still, parents of a newborn child with ambiguous sex are expected to make a far-reaching decision for the child: should the child be operated upon so that it has either female or male genitals? The aim of this article is to examine, phenomenologically, why parents decide to have their children undergo genital surgery when it is not necessary for the child’s physiological functions. Drawing on phenomenological work by (...) Maurice Merleau-Ponty, Simone de Beauvoir and Sara Ahmed, we examine parents’ frustration when their child’s sex is ambiguous and their experiences of the practice of medical sex assignment. We also examine parental identity work when the child has been assigned a sex and the interaction between parents and medical professionals when parents make decisions regarding surgery on their child. Furthermore, we provide a critical perspective on the surgical practice. (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)

Intersex being a birth impairment in human babies is a fact of humanprecreation. Opposed to normal birth of humans as males and females incidentsof babies with vague gender identity have perturbed people and families asto how to socially place them within the binary system of men and womenin the community. In Islam, it is more important in view of the genderedorientation of some Islamic laws and its system of social ethics. Accordingly,jurists formulated an Islamic blueprint to manage this segment. (...) However,their main criteria to align such individuals to one of the normal genders wereinadequate to assign a specific sex to all intersex. Medical science, on the otherhand, proposes not only to achieve precise diagnoses of intersex conditionsbut also to manage them medically. Accordingly, Muslim jurists and muftisby and large celebrated this medical solution as a better remedy to resolve thisjuridical perplexing question. This study, however, argues that juristic stamp ofapproval needs to be more ethically grounded so as to avoid pitfalls inherent inthis medical innovation. (shrink)

Since the late 1980s, intersex adults and activists have critiqued the clinical recommendations defined in the 1950s to treat children born with ‘ambiguous genitalia’ with normalising medicine. While their struggles continue, in particular to halt the practice of genital surgery in early infancy, some European surgeons travel to African countries to transfer standards of care that have become highly controversial in the North, including in the medical community. Simple disapproval of these tours as ‘surgical safaris’ forecloses the possibility (...) of analysing more complex situations in which the so-called transfer of competence involves surgeons who promote ‘less cutting and more talking’. Such is the case – and the interest – of the surgical missions in West Africa in which I conducted recent fieldwork, accompanying a team of paediatric surgeons from a European university hospital collaborating with a renowned international NGO. This article analyses the ways in which a variation of sex development called hypospadias is framed and managed in this context through what I call a surgical script for hypospadias. I examine the conditions of (im-)possibility for Northern surgeons to operationalise, and sometimes revise, this script at the missions (but also closer to home). I discuss what the surgeons do in practice to reflect critically on the normative work of the surgical script for hypospadias as a social script on morphological ideals of sex, gender and reproductive heterosexuality. I consider in what sense genital surgery can be said to (re-)construct ‘normal’-looking genitalia, but also, fundamentally, the very idea of genitalia. (shrink)

This paper presents research regarding the monitoring of the brain and the adequacy of anesthesia during surgery. Particular variables are derived from EEG and ECG signals and are correlated to anesthetic gas (sevoflurane) concentration, in pediatric anesthesia. The methods used for parameter extraction are based on change detection theory and time-frequency representation. Preliminary results show that the expired anesthetic gas concentration modulates both the heart rate variability and the duration of the burst suppression. Monitors of the central nervous (...) system and autonomic nervous system activities can be expected to be based on these variables. (shrink)

The original “Dutch Protocol”—the treatment model comprised of puberty blockers, cross‐sex hormones, and surgery—was intended to improve the mental and physical health of pediatric patients experiencing distress over their sexed bodies. Consequently, both researchers and clinicians have couched eligibility for treatment and measures of treatment efficacy in terms of the interventions’ effects on outcomes such as gender dysphoria, depression, anxiety, and suicide. However, recent systematic reviews have concluded that the scientific evidence supporting these interventions is uncertain, leading to (...) significant international differences in what treatments are offered to youth. Against this backdrop, a different argumentative approach has emerged in support of gender‐affirming care. This approach appeals not to reductions in patient morbidity or mortality but to patient autonomy, where medical intervention is pursued as a means to the satisfaction of a patient's “embodiment goals.” In this article, I raise objections to autonomy‐based justifications for pediatric gender‐affirming care, concluding that these arguments misunderstand the place of autonomy in clinical decision‐making and, consequently, put patients at risk of medical harm. (shrink)

This book offers a theoretical and practical overview of the specific ethical and legal issues in pediatric organ transplantation. Written by a team of leading experts, Ethical Issues in Pediatric Organ Transplantation addresses those difficult ethical questions concerning clinical, organizational, legal and policy issues including donor, recipient and allocation issues. Challenging topics, including children as donors, donation after cardiac death, misattributed paternity, familial conflicts of interest, developmental disability as a listing criteria, small bowel transplant, and considerations in navigating (...) the media are discussed. It serves as a fundamental handbook and resource for pediatricians, transplant health care professionals, trainees, graduate students, scholars, practitioners of bioethics and health policy makers. (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 (PCC) and Shared Decision Making (SDM) 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)

When the benefits of surgery do not outweigh the harms or where they do not clearly do so, surgical interventions become morally contested. Cutting to the Core examines a number of such surgeries, including infant male circumcision and cutting the genitals of female children, the separation of conjoined twins, surgical sex assignment of intersex children and the surgical re-assignment of transsexuals, limb and face transplantation, cosmetic surgery, and placebo surgery.

In this paper I aim to show why pediatric suffering must be understood as a judgment or evaluation, rather than a mental state. To accomplish this task, first I analyze the various ways that the label of suffering is used in pediatric practice. Out of this analysis emerge what I call the twin poles of pediatric suffering. At one pole sits the belief that infants and children with severe cognitive impairment cannot suffer because they are nonverbal or (...) lack subjective life experience. At the other pole exists the idea that once child suffering reaches some threshold it is ethical to eliminate the sufferer. Concerningly, at both poles, any particular child vanishes from view. Second, in an attempt to identify a theory of suffering inclusive of children, I examine two prominent so-called experiential accounts of suffering. I find them both wanting on account of their absurd entailments and their flawed assumptions regarding the subjective experiences of people who cannot communicate expressively. Finally, I extend arguments found in Alastair MacIntyre’s Dependent Rational Animals to argue that child suffering can be understood only as a set of absences—absences of conditions such as love, warmth, and freedom from pain. An evaluation of these absences reveals the exquisite dependency of children. It also discloses why pediatric suffering is necessarily a social and political event. Unlike adults, children will never be either the authors or the mitigators of their own suffering. Rather, children must rely wholly on others in order to resist suffering, grow, and flourish. (shrink)

Background With increased emphasis on healthcare transparency, parents are increasingly asking to be present for procedures performed on their children, especially in high-acuity contexts like care of children with congenital heart disease (CHD), where procedures may inform critical care decisions. In addition, observations of complex care may better communicate clinical knowledge and benefit grieving after adverse events. We examined clinicians’ views on current family presence (FP) efforts and on the expansion of FP to include the observation of operative procedures.Methods This (...) is a qualitative study using semi-structured interviews and content analysis within a pediatric heart center. Participants included perioperative and ICU nurses, physicians, advanced practice providers, and child life specialists. Interviews were recorded, transcribed, and analyzed using inductive content analysis.Results Twenty provider interviews were conducted; 70% had less than 10 years of experience, with 30% having between 10 and 20 years; 50% were physicians who work in procedural environments; 25% were nurses; 15% were advanced practice providers; 10% were child-life specialists. Four categories emerged: (1) positive impact of FP, (2) negative impact of FP, (3) limitations to achieving FP, and (4) policies and procedures for FP.Conclusion Participants reported that current FP uses reduce patient anxiety and improve patient safety, family understanding of clinical decisions, and coping. Drawbacks include parental interference in care, lack of protocols to guide FP, increased family/staff anxiety, lack of staff resources to support FP, and potential access limitations for diverse populations. Participants anticipated that these problems would occur with the expansion to intraoperative FP. (shrink)

This article analyzes the sex and gender identity rhetoric of members of the Intersex Society of North America, which is a self-help and advocacy group whose main goals are to stop unnecessary genital surgery in ambiguously sexed infants and make medical histories available to adult intersexuals. By examining the organization's indebtedness to feminist and gay/lesbian/transperson theory and practice, the article shows how these political movements have progressively challenged the equation of sex with gender and how intersexuality exemplifies the (...) theoretical and practical problems of identity politics. (shrink)

This article focuses on the dynamic between the medical policy on intersex bodies and intersex activists in Israel. Recently, in many countries changes have taken place in medical guidelines regarding intersex patients and laws that regulate medical practices and prohibit irreversible surgeries for intersex babies for cosmetic reasons and without the patient’s consent. In Israel, intersex activists are limited by several factors. On the one hand, they are influenced by the achievements of intersex activism (...) around the world but on the other, the pathologizing medical discourse and socio-medical practices, which include early diagnosis, early irreversible surgeries, and secrecy surrounding intersexed bodies, present obstacles to achieving bodily autonomy for intersex individuals and social recognition of different sex development. Nevertheless, intersex activists are attempting to find different social and media spaces in which to achieve public acknowledgement and future bodily autonomy for intersexed people and seeking medical professionals’ cooperation. Recently, the Israeli Ministry of Health published a new circular for intersex/DSD patients, and while it does not clearly forbid irreversible surgeries, it provides information about the complexities of intersex people and their experience. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:“Normalizing” Intersex Didn’t Feel Normal or Honest to Me.Karen A. WalshI am an intersex woman with Complete Androgen Insensitivity Syndrome (CAIS). My 57–year history with this has its own trajectory—mostly driven by medical events, and how I and my parents reacted. Most of my treatment by physicians has not been positive. It didn’t make me “normal” at all. I was born normal and didn’t require medical interventions. (...) And by the way, I’ve never been confused about who or what I am.Truthful disclosure didn’t come to me about my biology and what was done to me as an infant until I was 33, when I forced the issue by removing my medical records from my endocrinologist’s office. I learned that there was never full disclosure to my [End Page 119] parents either, and therefore there was no informed consent for the “corrective” surgeries performed on me as an infant. My parents were only told that their little girl would get cancer and would not have a normal development as a girl unless her “deformed ovaries” were removed, and that they should never discuss these problems with me. Thus, after having presented with an inguinal hernia and having exploratory surgery at age 16 months, my intra–abdominal testes were removed in a second surgery two months later. I was pronounced a “male pseudohermaphrodite,” a diagnosis that was shared neither with my parents nor with me.Years later, I discovered an article my surgeon published in 1960 in the Delaware Medical Journal about me and another intersex person he operated on (whom he labeled a “true hermaphrodite”). The article gives a very detailed pathology report of my gonads, but only two sentences regarding my welfare and the rationale for performing those surgeries. Dr. J. F. Kustrup wrote in this article, “These [two cases] emphasize the need for early diagnosis and treatment in order to avoid the possibility of malignant change and to permit these individuals to follow a normal psychosexual pattern.” And: “Hermaphroditism and pseudohermaphroditism are conditions in which early diagnosis and treatment are essential to avoid malignant degeneration and to allow the child some chance toward normal pyschic [sic] development.” I was grateful to find this article because it revealed the unfounded assumptions underpinning the recommendations for treatment, much of which continues today. Worse even than the sort of social prejudice that shapes treatment is the absence of evidence for what doctors treat as “necessary” interventions. For my syndrome, CAIS, there never was—and still is not—data to support the cancer scare, or the opinion that I’d be confused and not have a normal life.From about the age of four, I can remember being different and being stonewalled by my doctor and prevented by my parents from talking about it. The feelings and fears I tried to express were shushed away, and I could tell that my questions were upsetting everyone. Even if I had wanted to be complicit with their lame diversions and nonsensical explanations, the massive abdominal scars were there as a daily reminder and hinted at a very different story.The Road to Hell is Paved with Good IntentionsGrowing up, I was treated like a fascinoma and a lab rat at a major teaching hospital on the East Coast. All I learned from those doctors as a young kid was what it feels like to be ogled, photographed and probed by a roomful of white–coated male doctors. Dissociation made itself my friend, and helped me to cope through the annual genital and anal exams and probing. I thought I was a freak and I felt completely powerless to protect myself from them and their “care”.At my annual appointment at age 12, with my mom present, three doctors told me I was infertile. Learning that I couldn’t have kids really saddened and shocked me, but there was no opportunity to talk about my feelings—either that day, or any time afterward. I was told to stop crying. I remember them telling me that there was no one else like me and that this was a random genetic anomaly, thereby reinforcing the freakishness... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Navigating Intersex Healthcare: My OdysseyCynthiaI was born in 1965 with what the medical community called “ambiguous genitalia.” My initial announcement as a boy was called into question upon closer assessment of my atypical anatomy by medical specialists at a children’s hospital in Chicago. That team of medical experts included a pediatric urologist and a pediatric endocrinologist, as well as a prominent pediatric surgeon, who was (...) at that time presiding president of the relatively newly established American Pediatric Surgeons Association. I have wondered over the years whether, or to what extent, that status and position had any important impact on the unfolding of my medical case.Just over 100 days after my birth, I was surgically and socially reassigned female, and renamed Cynthia. My mother and physician father, ages 25 and 30, respectively, with two young sons at home, did the best they could to move ahead in life as a young family. Part of our family story is that my unusual birth contributed to my parents’ decision to move away from Chicago, where both of my parents had been raised and wanted to settle, and where my father had many professional opportunities. We relocated to Southern California to make a “fresh start” where no one would know the dark secret too terrible to be shared with any beyond a small circle of close friends and family. It would never be talked about openly.With the exception of the rare and dreaded occasions of medical appointments with my primary care physician, or maybe an endocrinologist to renew hormone prescriptions, my parents chose [End Page E3] to have me travel from our home in San Diego to a clinician in Los Angeles, away from my father’s medical colleagues. This decision was puzzling to me at the time, and maybe more so now. These trips were a source of considerable stress and anxiety, as I had no idea of what to expect; my mother told me only that treatment would “help me get my period started.” I was instructed to tell my friends and teachers that I was taking off school on a weekday to go on a “shopping trip” with my mother. As far as I know, these trips were never discussed at home with my older brothers. I heard years later that my parents disclosed some information about me with my brothers when my parents travelled outside the country. They felt that my brothers should know what had happened to me in the event of a catastrophic accident that might prevent my parents from telling me themselves. I suppose they believed that I wasn’t ready at the time to be told my own life and medical history. I can’t say for sure.I don’t want to judge my parents too harshly for how they handled my medical care. I know that it was an extremely stressful and uncertain time for them, and peer support, which I know now is so vitally important for both parents and young affected individuals like myself, was not made available to us. I never thought to ask about such help, or even consider the idea that anyone else would be in a similar situation like mine. I don’t think I would have been even remotely comfortable or willing to discuss it openly at that point.In my early twenties, I had to face another milestone in my journey and in my interactions with the medical community. I had yet to have the vaginoplasty I was told I “needed.” There was no discussion as to whether or not I wanted it or not. It just had to be done, and I was aware of the limitations I had at this vulnerable time in my life when my peer group was sexually active and I was not. My awareness of the obstacle posed by my difference made me avoid the topic of dating; it was difficult even to think about the possibility of a romantic relationship. I put it out of my mind, but I knew that it was a significant concern for my parents. My physician father did most of the prodding to get me to acknowledge the reality... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:A Bittersweet Score:A Father’s Account of His Family’s 20-Year Journey After a Pediatric Brain Tumor DiagnosisChristopher RileyI hadn’t seen him for 20 years, not since the day he drilled a hole in Peter’s head and left the stainless steel drill and bloody bit on the bedside table. He figured prominently in the story I often told of that day when he, a doctor in training, [End Page 3] (...) informed my wife Kathy and me that, “Wow,” our five-year-old son had “an impressive tumor” in his brain. He announced it with the admiration I reserve for a touchdown pass or stunning sunset. Since that day, he had become a venerable physician. Back then he was the resident who met us in the ER after our pediatrician told us that the MRI of Peter’s brain was “not normal,” that “there might be a growth.” As if there might not be. I imagined that Peter’s brain might simply have an unusual shape, or that the scan revealed some undiscovered fracture and the authorities only wanted to lock me up and all with my son would be well. The thrilled young doctor slew those hopes with an ice pick: “Wow, that’s an impressive tumor.” I said, “That’s the first time anyone has used the word tumor.” The doctor appeared mortified and started over.Now 20 years later we found ourselves at the same party and I felt a compulsion to introduce myself, remind him we’d met that day in 1993, and tell him what had become of Peter and his family in the decades since he’d made that mortifying mistake, one I hoped had become for him a defining moment. To my disappointment, he didn’t seem to remember.Peter was my red-haired boy. Fearless and whip smart, he told a stream of knock-knock jokes and performed dance routines choreographed by his 8-year-old sister Rachel. Six months of headaches, vomiting and clumsy falls led to discovery of the tumor. When I phoned my parents with the news, I couldn’t speak the words, words that felt as if they spelled my boy’s doom. My body refused to pronounce them.The war for Peter’s life began with surgery. I sat with Kathy in the surgical waiting area, fearing every minute that I would see the surgeon approaching with his shoulders slumped in mortal defeat. I learned during those hours that fear of your child’s death is a physical pain, a constriction in the chest, a suffocation. At the end of that wait, the surgeon told us the tumor was out and Peter had survived. The pathology indicated the tumor was a medulloblastoma. Without additional treatment, including radiation, it was certain to come back. Kathy’s knees buckled. Having just endured one life-and-death battle, we were plunged into another. To complicate matters, Peter wasn’t waking from surgery. Even after the anesthesia wore off, Peter remained groggy, unable to move or focus his eyes.Through the following days, Peter failed to rouse or speak. Sores formed at the back of his neck where his unswallowed saliva pooled. Neurologists doubted he knew us. His doctors hoped Peter would recover but it was possible he would remain as he was indefinitely. As I sat holding his useless hand, watching his useless body, I thought I’d never loved him as much as I did now.Peter’s doctors presented two treatment options. The first consisted of relatively high doses of daily radiation, the most effective known method for preventing the return of the cancer. But radiation wasn’t good for young brains. It “shaved IQ points,” they said in wild understatement. So they offered a second, experimental option, one that reduced radiation by a third and added months of chemotherapy. The doctors hoped this new regimen would be as effective as the old but cause less cognitive damage. They asked us to choose. It seemed impossible. We gathered the scant available data. We weighed the risks. We prayed. We took a leap. Without asking him, we made a decision for Peter we knew... (shrink)

When the benefits of surgery do not outweigh the harms or where they do not clearly do so, surgical interventions become morally contested. Cutting to the Core examines a number of such surgeries, including infant male circumcision and cutting the genitals of female children, the separation of conjoined twins, surgical sex assignment of intersex children and the surgical re-assignment of transsexuals, limb and face transplantation, cosmetic surgery, and placebo surgery.

Intersexual infants and infants with other genital abnormalities often receive genital surgery for sex assignment or for normalizing purposes. The wisdom and beneficence of these practices have been questioned by intersexual individuals, support groups, some doctors, and the media. Because the practices have been developed without long-term studies to evaluate them, pediatric urologists and parents of such children must face decisions with very little guidance from empirical support. In the face of ignorance about what is really the best (...) medical response to intersexuality or genital abnormalities, some have argued for a moratorium on infant genital surgery until empirical studies are available. The urgent need for retrospective studies is now being recognized in medical journals. Because genital surgery may be appropriate and beneficent in some of these conditions, or in some degrees of these conditions, but not in others, retrospective studies must be devised to examine the degree of success of surgery for each of these conditions, or levels thereof. (shrink)

In a recent article, Tyler Tate argues that the suffering of children — especially children with severe cognitive impairments — should be regarded as the antithesis of flourishing, where flourishing is relative to one’s individual characteristics and essentially involves receiving care from others. Although initially persuasive, Tate’s theory is ambiguous in several ways, leading to significant conceptual problems. By identifying flourishing with receiving care, Tate raises questions about the importance of care that he does not address, giving rise to a (...) bootstrapping problem. By making flourishing relative to an individual’s circumstances, Tate is forced to confront questions about exactly how relative it can be, suggesting the possibility that, on his view, to flourish is simply to be however one is. In an attempt to surmount these problems, I offer a revision and restatement of Tate’s view that defines the relationship between individualized flourishing and the more conventional, species-relative concept, and describe more clearly the role that care should play with respect to flourishing — one that is instrumental and not merely constitutive. Even this restated view, however, fails to answer difficult questions about how one should respond to the medical needs of some children, highlighting the fact that a conceptual analysis of suffering may do little, in the end, to untangle ethical dilemmas in the care of severely ill children. (shrink)

Surgeries inevitably raise questions of bodily integrity: how the post-surgical body reframes (or does not reframe) its experiences of functionality to incorporate new features. Nevertheless, when we try to define or delimit the concept of bodily integrity, it becomes increasingly important to think about how the physical and social unease caused by some forms of surgeries sits alongside the more transformative potential of surgical bodily modification. This article focuses on aesthetic genital surgeries on infants with disorders of sex development (DSD, (...) previously termed ‘intersex’ conditions). Using the work of Pierre Bourdieu and Elizabeth Freeman on time, bodies and ‘chrononormativity’, this article excavates not only the temporalities that produce what I would term ‘chrono-abnormalities’ of sex development, but also the temporalized medical responses, including surgeries, which retrieve ‘abnormal’ bodies into more normative time-lines. My conclusion is that when DSD-affected individuals experience aesthetic genital surgeries as painful and full of social unease this is not necessarily because the pre-surgical body was the ‘natural’, ‘whole’ or ‘intact’ body prior to surgery. Instead, it is because these surgeries interrupt what Bourdieu would term a sense of corporeal ‘immersion into the forthcoming’; an immersion which, in his theory of time as social action, is intimately linked with social power and possibilities. (shrink)

Technological advances in the field of medicine and health sciences not only manipulate the normal human body and sex but also provide for surgical and hormonal management of hermaphroditism. Consequently, sex assignment surgery has not only become a standard care for babies born with genital abnormalities in the West but even in some Muslim states. On the positive side, it goes a long way in saving children born with abnormal genitalia from numerous legal interdictions of the pre-sex corrective (...) class='Hi'>surgery. Nevertheless, the larger ethical and legal questions that medical management of genital abnormality raises to some extent have not been adequately appreciated by contemporary Muslim responses. This article, therefore, in principle argues against surgical management of intersexuality during early infancy from the Islamic legal perspective. (shrink)

There exist a variety of biological variations known as intersex conditions or disorders of sex development, which cause a per­son’s sex as male or female to be uncertain at birth. In the past several decades, cosmetic surgery aimed at “normalizing” the infant’s body has become an increasingly controversial treatment for an infant with an IC or DSD. While ICs and DSDs are not addressed directly by Catholic moral teaching, the Catholic Tradition has a number of tools that can (...) undergird a Catholic response to the suffering of people with ICs and DSDs and support improved medical, pastoral, and spiritual care for them and their families. (shrink)

The history of the field of intersex bodies/bodies with variations of sex development reflects the ongoing tension between sociomedical attempts to control uncertainty and reduce the duration of corporeal uncertainty by means of early diagnosis and treatment, and the embodied subjects who resist or challenge these attempts, which ultimately increase uncertainty. Based on various qualitative studies in the field of intersex, this article describes three temporal sociomedical approaches that have evolved over the last decade and aims to address (...) the uncertainty surrounding intersex/VSD bodies. These approaches are the corrective-concealing approach, which includes early surgeries and hormone therapies intended to “correct” intersex conditions and the deliberate concealment of the ambiguity and uncertainty associated with intersex conditions; the preventive approach, which involves early genetic diagnostic methods aimed at regulating or preventing the recurrence of hereditary conditions under the umbrella of VSD; and the wait-and-see approach, which perceives intersex bodies as natural variations and encourages parents to take time, wait, and give their children the right to bodily autonomy. A comparison of these approaches from biopolitical, phenomenological, and pragmatic perspectives reveals that time is an essential social agent in addressing and controlling uncertainty, a gatekeeper of social norms and social and physical orders, and, on the other hand, a sociopolitical agent that enables creative social change. (shrink)

Important lessons must be learned from the Bristol inquiryI was disturbed when I first read the following in an October 1998 issue of the Medical Journal of Australia."In June 1998, the Professional Conduct Committee of the General Medical Council of the United Kingdom concluded the longest running case it has considered [this] century. Three medical practitioners were accused of serious professional misconduct relating to 29 deaths in 53 paediatric cardiac operations undertaken at the Bristol Royal Infirmary between 1988 and 1995. (...) All three denied the charges but, after 65 days of evidence over eight months , all three were found guilty." "The doctors concerned are Mr James Wisheart, a paediatric and adult cardiac surgeon and the former Medical Director of the United Bristol Healthcare Trust; Mr Janardan Dhasmana, paediatric and adult cardiac surgeon; and Dr John Roylance, a former radiologist, and Chief Executive of the Trust." "The central allegations were that the Chief Executive and the Medical Director allowed to be carried out, and the two paediatric cardiac surgeons carried out, operations on children knowing that the mortality rates for these operations, in the hands of these surgeons, were high. Furthermore, the surgeons were accused of not communicating to the parents the correct risk of death for these operations in their hands.1"Mr Wisheart and Dr Roylance were subsequently struck off the medical register. Mr Dhasmana was disqualified from practising paediatric cardiac surgery for three years. The doctors required police protection as they left the General Medical Council hearing as furious parents shouted “murderer” and “bastard”.2Why did this occur?Dr Stephen Bolsin has presented a …. (shrink)

Yearly pediatric cardiac surgery missions to Ghana are of tremendous benefit to local children, but may create thorny ethical dilemmas for local clinicians who refer and screen children for the mission and who provide care to the children after the mission concludes for the year. This article presents the experiences and concerns of a pediatrician who is a local member of the Hearts and Minds of Ghana project.

In lieu of an abstract, here is a brief excerpt of the content:Promoting Health and Social Progress by Accepting and Depathologizing Benign Intersex TraitsHida ViloriaI was born with ambiguous genitalia and it was a doctor who, by honoring my bodily integrity and not “fixing” me, gave me the greatest gift I’ve ever received. Because my body and its sexual traits are a positive, fundamental part of my experience and identity as a human being, I know that having my genitals (...) removed or altered according to someone else’s vision would have deeply damaged me, both physically and psychologically.The doctor who protected my autonomy was, unsurprisingly, my father. I say “unsurprisingly” because in my experience parents are typically more protective of their children than doctors are of their patients. Also, doctors do not discuss cases with other doctors in the same way they do with laypeople, as doctors know more about medical issues such as the risks involved in infant genital surgery.Other than having clitoromegaly (a large clitoris), my reproductive anatomy is typically female, and so I was assigned female and raised as such without incident. My parents didn’t discuss my intersex traits with me, and I grew up thinking of myself and being accepted as, a girl.When I began menstruating, my father told me I’d need to take pills to “grow taller.” I thought this unusual, as I wasn’t short, and later overheard my mother arguing with him, saying that the pills were “experimental”. I was reminded of this discussion years later, when she told me that the pills had actually been hormones to make my breasts grow. I never took them though as she convinced my father not to make me.Article 7 of The International Covenant on Civil and Political Rights states that, “No one shall be subjected without his free consent to medical or scientific experimentation,” and I’m grateful to both my parents for protecting my civil rights as they protected my health.Due to my Catholic upbringing and schooling, I had no opportunity to compare my genitals to other girls’, and it wasn’t until the age of twelve that I realized, while perusing magazines with friends, that I have atypical sex anatomy. Contrary to common speculation however, this awareness didn’t make me question being female. I simply assumed there must be some genital variation in humans.I feel my parents made the wisest decision possible by registering me as one of the two accepted, available genders but allowing me to live, physically and behaviorally, as who I am. Despite not having developed a stereotypically curvaceous female figure, I was popular and excelled in typically feminine social activities, as well as sports and academics. For example, I was one of four girls selected out of one hundred twenty–five that competed for a spot on my high school cheerleading [End Page 114] squad when I tried out to help a friend who needed a tryout partner.Other than escaping IGM (Intersex Genital Mutilation) and estrogen therapy, I’ve had only a few experiences pertaining to my medical care around being intersex. These experiences fall into two categories: seeing medical doctors who treated me the same after discovering that I have ambiguous genitalia, and seeing ones who didn’t. I feel incredibly blessed that my experiences in the former category vastly outweigh the latter.My first experience came at the age of twenty, when a gynecologist asked me if my clitoris had always been as large as it is. I responded that it had, and she said, while looking at me disapprovingly, that she’d like to do some tests. When I asked her what they were for though, she wouldn’t respond directly. She said I’d reported having some upper lip hair, and acne, on my intake forms. I replied that neither were above average, and asked if there were health issues I should be concerned about. She reluctantly said no. I asked what reason there was then for undergoing tests because of the size of my clitoris.She finally responded, “It’s just not normal.”Fortunately, I’d had positive reactions to my sex traits from the people I’d dated. For example, the first... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Standing at the Intersections: Navigating Life as a Black Intersex ManSean Saifa WallAs I sit down to write this narrative, my mind is reflecting on the past year. This year has seen numerous protests against state–sanctioned violence with the declaration that “Black Lives Matter”. As a Black intersex man, I have witnessed the impact of state–sanctioned violence on my family and my community, both from the police (...) state and medical community. I charge the police state and the medical community with state– sanctioned violence: Each targets non–normative bodies—the former through incarceration and execution, and the latter by means of surgical and hormonal intervention. As a Black intersex man, I stand at the intersection bearing witness to how this violence has incarcerated my friends and loved ones as well as being subjected to medically unnecessary surgical intervention. Although this is where I stand now, both socially and politically, I have not always existed here.I was born in the winter of 1978 at Columbia–Presbyterian Hospital in New York City. I was the youngest of five children and one of three children in my family who were born with an intersex trait now known as androgen insensitivity syndrome (AIS). At the time, AIS was referred to as “testicular [End Page 117] feminization syndrome.” Upon receiving my medical records years later at the age of twenty–five, I noticed scribbling and a barrage of notes indicating the process by which the doctors assigned my gender as female. Although I had ambiguous genitalia, which caused some initial confusion among the doctors, XY chromosomes were not enough for me to be raised as male. My mother was told I would be raised as a girl and, according to the medical records, “function as such.”Unlike my sisters who were also born with AIS, my mom was not swayed by the surgical recommendations doctors made about my body. As a matter of protocol, my sisters’ gonads were removed in infancy, however, my mom made the decision that my testes would remain with me until they had to be removed.Because of intense pain in my groin area, my testicles were removed when I was thirteen years old. The pain that I felt following the surgery was perhaps the worst pain that I have experienced in my entire life. After surgery, my pediatrician prescribed estrogen and Provera as a hormonal replacement regimen. Fatty deposits changed the shape and contours of my face. Once robust and chiseled thighs now harbored cellulite. The beginnings of facial hair and prominent body hair became wispy and nonexistent. What was hard and defined became soft.At no point did anyone ask me what I wanted to do with my body.I actually missed the effects of my natural testosterone such as a deepening voice, increased hair and muscle mass; when I asked if I could take both testosterone and estrogen after surgery, my mother remarked, “You would look too weird.”The hormone therapy was coupled with intense social conditioning. I feel as if the social conditioning for young women raised with AIS is suffocating. When doctors prescribed hormones for me to take, my mother constantly reminded me how “beautiful” the little yellow pills would make me. As a means of reassurance, my pediatrician told my mom that “a lot of fashion models” have AIS and that I would most certainly be beautiful. In our dominant US culture, gender norms can already be oppressive, but for women with AIS, there is the impact of gender norms and the underlying fear that women with AIS are not really women since they have XY chromosomes. I did not succumb to the pressure to be more feminine, but actually gravitated toward masculinity. Before transitioning to live as a man, I considered myself a butch woman. When I came out of the closet at fourteen years old and presented as a masculine young woman, I never felt safe. Because I dated women who were more feminine than I, my relationship with these women seemed threatening to men who repeatedly reminded me through harassment and threats that “I was not a man.” Of course, I wasn’t trying to be a... (shrink)

After years of secrecy the public is becoming more aware of different intersex conditions in newborns. This enlightenment is leading to increased discussion of the ethical issues raised by surgical management of such conditions. A central issue turns on consent to surgery for intersex conditions. Since surgeries to “correct” the physical manifestations of intersexuality are initiated early in infancy, and infants are unable to consent, informed consent must be given by parents. Yet there is evidence that parents (...) are routinely deceived or incompletely informed when making these life-impacting decisions for the thousands of children born intersexed each year. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Whose Voice Matters? The Role of Ethics Consultation in Supporting the 16-Year-Old Healthcare Decision-Maker of a Critically Ill NeonateMichelle ProngEditor’s Note. The details of the patient case presented below have been modified to protect the family’s privacy. Despite these modifications, the author has made every effort to preserve the story’s clinical, social, and ethical nuances.The patient was born at 31 weeks with Trisomy 13 and lived her entire life (...) in the NICU. She was born to a 16-year-old mother (who I will call M.H.) as the result of an unintended pregnancy. This child was just about a month old when I became part of her care team. The patient was born with a severe congenital heart defect that our pediatric cardiac surgery team—as well as surgical teams at multiple other academic children’s hospitals—determined to be inoperable. Because of her severe heart defect, she required significant respiratory support throughout her life and continuous IV medications to keep her organs perfused.When I came on service, M.H. visited irregularly and depended on her mother (the patient’s grandmother, who I will call D.R.) for transportation. Social work had arranged for M.H. to have daily transportation to the hospital after school and work; however, M.H. was denied the opportunity to spend the night with her infant. It was against hospital policy for minors to stay overnight as visitors, and additional visitation guidelines related to COVID precautions were also in place at the time. As her biological mother, M.H. was designated as the patient’s healthcare decision-maker. The inability for M.H. to stay overnight on the basis of her age despite being the patient’s parent and healthcare decision-maker generated significant moral distress for several members of the care team. The social dynamic between M.H. and D.R. was such that D.R. was far more participatory in rounds and goals of care conversations, and M.H. was almost always reserved and withdrawn. On multiple occasions, different team members attempted to have conversations directly with M.H. She either was not engaged in the conversation, would answer with short phrases, or, when D.R. was present, would defer to D.R. to speak for her.Throughout the patient’s life, D.R. seemed to be the driving force behind most treatment and goals of care decisions. In multiple conversations I had with the family, both one-on-one with M.H. and jointly with M.H. and D.R., it was made clear that they wanted “everything done” and were hopeful for “a miracle.” D.R. emphasized that she didn’t want anyone to “give up” on the patient and wanted to exhaust all possible options for a cure. Overall, our team had become increasingly concerned that the medical decision makers for this patient did not comprehend the very poor prognosis of her congenital cardiac anomaly, either with or without surgery. As the medical team, we would be subjecting this child to harm that would be unlikely to change her prognosis. [End Page 19]Our NICU team, as well as various other teams, discussed the case repeatedly without a resolution that felt satisfactory. A complicating factor for this particularly socially and ethically challenging case was that the team turned over relatively frequently during the patient’s long-term stay, making it difficult for each successive team to understand what had already been done for this patient and her family. We decided to seek help from the Clinical Ethics Consulting (CEC) service. My expectation for the CEC service was that the consultant would help our team think differently about both the clinical and social elements of the situation and help us come to a resolution since we could not figure out a good solution on our own.Our consult question for the CEC was fourfold: 1) Did the patient’s mother meet criteria for an emancipated minor (to get around the visitation policy), 2) Is M.H. the appropriate healthcare decision maker given her lack of engagement in goals of care conversations and perceived understanding of the severity of her... (shrink)

Intersex is an umbrella term for variations in sexual characteristics. Although 1.7% to 4% of the population is born outside the framework of sexual binarity, the bodies of intersex people are pathologized and, according to medical specialists, in need of “repair”. This institutional stigmatization takes the form of sex reassignment surgery or hormone treatments, justified by socio-cultural premises based on heterosexist norms. Medical discourse is based less on the health, physical and psychological dangers of intersex patients (...) than on safeguarding gendered bicategorization. At the same time, individuals with intersex variations are demanding their right to self-determination, in particular through respect for their free and informed consent. Sex-assignment surgery, motivated and oriented by historically constructed gender binarity, lead to two types of epistemic injustice. A conceptual philosophical analysis of testimonial injustice and hermeneutic injustice will help us to understand the process of making intersex invisible through the epistemic relationship between intersex people and physicians. (shrink)