Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children’s position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon the notion of capacity (...) is discussed, followed by an examination of Vygostky’s contextualist view on children’s development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults’ decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties. (shrink)

Machine Learning (ML) is on the rise in medicine, promising improved diagnostic, therapeutic and prognostic clinical tools. While these technological innovations are bound to transform health care, they also bring new ethical concerns to the forefront. One particularly elusive challenge regards discriminatory algorithmic judgements based on biases inherent in the training data. A common line of reasoning distinguishes between justified differential treatments that mirror true disparities between socially salient groups, and unjustified biases which do not, leading to misdiagnosis and erroneous (...) treatment. In the curation of training data this strategy runs into severe problems though, since distinguishing between the two can be next to impossible. We thus plead for a pragmatist dealing with algorithmic bias in healthcare environments. By recurring to a recent reformulation of William James’s pragmatist understanding of truth, we recommend that, instead of aiming at a supposedly objective truth, outcome-based therapeutic usefulness should serve as the guiding principle for assessing ML applications in medicine. (shrink)

Debates on morally acceptable and lawful end-of-life practices in pediatrics were reignited by the recent amendment in Belgian law to allow euthanasia for minors of any age who meet the criteria for capacity. Euthanasia and its legalization in pediatrics are often opposed based on the availability of aggressive palliative sedation. For terminally ill patients, this type of sedation is often identified as continuous and deep sedation until death. We demonstrate that this reasoning is based on flawed assumptions: CDS is a (...) morally preferable alternative to euthanasia; CDS can meet the same patient needs as euthanasia; children lack the capacity and experience to make EOL decisions; unlike euthanasia, CDS does not raise capacity issues. Our aim is not to reject CDS as a valid option at the EOL, nor to offer a clear-cut defense of euthanasia for minors, but to emphasize the ethical issues with both practices. (shrink)

The aim of the study is to encourage a critical debate on the use of normality in the medical literature on DSD or intersex. For this purpose, a scoping review was conducted to identify and map the various ways in which “normal” is used in the medical literature on DSD between 2016 and 2020. We identified 75 studies, many of which were case studies highlighting rare cases of DSD, others, mainly retrospective observational studies, focused on improving diagnosis or treatment. The (...) most common use of the adjective normal was in association with phenotypic sex. Overall, appearance was the most commonly cited criteria to evaluate the normality of sex organs. More than 1/3 of the studies included also medical photographs of sex organs. This persistent use of normality in reference to phenotypic sex is worrisome given the long-term medicalization of intersex bodies in the name of a “normal” appearance or leading a “normal” life. Healthcare professionals should be more careful about the ethical implications of using photographs in publications given that many intersex persons describe their experience with medical photography as dehumanizing. (shrink)

Background: This article describes the overall attitudes of children, their parents, and attending physicians toward including or excluding pediatric patients in medical communication and health care decision-making processes. Methods: Fifty-two interviews were carried out with pediatric patients (n = 17), their parents (n = 19), and attending oncologists (n = 16) in eight Swiss pediatric oncology centers. The interviews were analyzed using thematic coding. Results: Parenting styles, the child's personality, and maturity are factors that have a great impact upon the (...) inclusion of children in their health care processes. Children reported the desire to be heard and involved, but they did not want to dominate the decision-making process. Ensuring trust in the parent–child and physician–patient relationships and respecting the child as the affected person were important values determining children's involvement. These two considerations were closely connected with the concern that fantasies are often worse than reality. Seeking children's compliance with treatment was a practical but critical reason for informing them about their health care. The urge to protect them from upsetting news sometimes resulted in their (partial) exclusion. Conclusions: The ethical imperative for inclusion of children in their health care choices was not so much determined by the right for self-determination, but by the need to include them. If children are excluded, they imagine things, become more isolated, and are left alone with their fears. Nevertheless, the urge to protect children is innate, as adults often underestimate children's coping capacities. (shrink)

In den letzten Jahren berichteten mehr und mehr Frauen von Gewalt und Respektlosigkeit in der Geburtshilfe. Inzwischen hat sich auch die Forschung verstärkt dieses Themas angenommen. Prävalenzschätzungen sind jedoch aufgrund erheblicher methodischer Schwächen noch nicht hinreichend genau zu beziffern. Die Vielzahl und Vielfalt der bestehenden Forschungsergebnisse lassen dennoch den Schluss zu, dass es in der Geburtshilfe in fast allen Regionen der Erde regelmäßig zu Gewalt und Respektlosigkeit und damit zu Menschenrechtsverletzungen kommt. Die Folgen reichen bis hin zu Posttraumatischen Belastungsstörungen, was (...) nahelegt, dass dieser Missstand sowohl aus Menschenrechts-Gründen als auch aus Gründen der öffentlichen Gesundheit nicht übergangen werden darf. Daher ist es außerordentlich besorgniserregend, wenn geburtshilfliche Fachpersonen im Angesicht solcher Berichte und Forschung in einen Modus der Selbstverteidigung verfallen und die Erfahrungen der Frauen in Frage sowie Abrede stellen, anstatt zuvorderst mit Empathie zu reagieren. Der vorliegende Text wendet sich einigen dieser Reaktionsmuster seitens geburtshilflicher Fachpersonen zu: einem falsch verstandenen Objektivitätsanspruch und der mithin abwegigen Forderung, die subjektiven Erfahrungen der Frauen zu objektivieren, einer leugnenden und herablassenden Wortwahl sowie einer mangelnden Anerkennung des von den Frauen Geschilderten und einer aus berufsethischer Perspektive unzureichend fürsorglichen Haltung. Solcherlei Reaktionen sind nicht nur unzulässig, sondern lassen ebenjenen Respekt vermissen, den die betroffenen Frauen sich während der Geburt wünschten und dessen Abwesenheit sie verletzte oder gar traumatisierte. Schließlich sollten Gewalt und Respektlosigkeit in der Geburtshilfe sowie die beschriebenen Reaktionen darauf vor dem Hintergrund geschlechtsspezifischer Machtverhältnisse und Gewalt an Frauen generell diskutiert werden. (shrink)

The involvement of children in non-beneficial clinical research is extremely important for improving pediatric care, but its ethical acceptability is still disputed. Therefore, various pro-research justifications have been proposed throughout the years. The present essay aims at contributing to the on-going discussion surrounding children’s participation in non-beneficial clinical research. Building on Wendler’s ‘contribution to a valuable project’ justification, but going beyond a risk/benefit analysis, it articulates a pro-research argument which appeals to a phenomenological view on the body and vulnerability. It (...) is claimed that children’s bodies are not mere physical objects, but body-subjects due to which children, as persons, can contribute to research that may hold no direct clinical benefit to them even before they can give informed consent. (shrink)

The aim of the study is to rethink the ethics of advanced motherhood. In the literature, delayed childbearing is usually discussed in the context of reproductive justice, and in relationship to ethical issues associated with the use and risk of assisted reproductive technologies. We aim to go beyond these more “traditional” ways in which reproductive ethics is framed by revisiting ethics itself through the lens of the figure of the so-called “older” mother. For this purpose, we start by exploring some (...) of the deep seated socio-cultural discourses in the context of procreation: ageism, ableism and the widespread bias towards geneticism and pronatalism. Afterwards, we provide a critical overview of the key arguments against or in support of advanced motherhood. We then briefly discuss how entrenchment by both sides has produced an impasse in the debate on the ethics of advanced motherhood and proceed by arguing that it is fundamental to bring about a change in this narrative. For this purpose, we will revisit the feminist usage of the concept of vulnerability which will allow us both to criticize culturally prescribed norms about motherhood and to address the painful reality of age-related fertility decline. In the last section, we argue that instead of defining “older” motherhood as an ethical problem, we should problematize the fact that female reproductive ageing is an understudied and ill-sourced topic. We believe that allocating resources to research to better understand female reproductive ageing is not only ethically permissible, but might even be ethically desirable. (shrink)

Key legislations in many countries emphasize the importance of involving children in decisions regarding their own health at a level commensurate with their age and capacities. Research is engaged in developing tools to assess capacity in children in order to facilitate their responsible involvement. These instruments, however, are usually based on the cognitive criteria for capacity assessment as defined by Appelbaum and Grisso and thus ill adapted to address the life-situation of children. The aim of this paper is to revisit (...) and critically reflect upon the current definitions of decision-making capacity. For this purpose, we propose to see capacity through the lens of essential contestability as it warns us against any reification of what it means to have capacity. Currently, capacity is often perceived of as a mental or cognitive ability which somehow resides within the person, obscuring the fact that capacity is not just an objective property which can be assessed, but always operates within a dominant cultural framework that “creates” that same capacity and defines the threshold between capable and incapable in a specific situation. Defining capacity as an essentially contested concept means using it in a questioning mode and giving space to alternative interpretations that might inform and advance the debate surrounding decision-making. (shrink)

The increasing integration of Machine Learning (ML) techniques into clinical care, driven in particular by Deep Learning (DL) using Artificial Neural Nets (ANNs), promises to reshape medical practice on various levels and across multiple medical fields. Much recent literature examines the ethical consequences of employing ML within medical and psychiatric practice but the potential impact on psychiatric diagnostic systems has so far not been well-developed. In this article, we aim to explore the challenges that arise from the recent use of (...) ANNs for the old problems of psychiatric nosology. To enable an empirically supported critical reflection on the topic, we conducted semi-structured qualitative interviews with Swiss and German experts in computational psychiatry. Here, we report our findings structured around two themes, namely (1) the possibility of using ML for defining or refining of psychiatric classification, and (2) the desirability of employing ML for psychiatric nosology. We discuss these themes by relating them to recent debates about network theory for psychiatric nosology and show why empirical research in the field should critically reflect on its contribution to psychopathology research. In sum, we argue that beyond technical, regulatory, and ethical challenges, philosophical reflection is crucial to harness the potential of ML in psychiatry. (shrink)

BackgroundNormality is both a descriptive and a normative concept. Undoubtedly, the normal often operates normatively as an exclusionary tool of cultural authority. While it has prominently found its way into the field of medicine, it remains rather unclear in what sense it is used. Thus, our study sought to elucidate people’s understanding of normality in medicine and to identify concepts that are linked to it.MethodsUsing convenient sampling, we carried out a cross-sectional survey. Since the survey was advertised through social media, (...) we employed an online survey. We performed descriptive and inferential analyses. Predictors were chosen in a theory-driven manner.ResultsIn total, 323 persons from 21 countries completed the survey. Analysis revealed that the overall acceptance of normality in medicine was associated with notions of injustice, authority, discrimination, and with having a medical profession. More precisely, for the field of mental health, injustice insensitivity, genderism and transphobia, and authority were positively associated with a person’s acceptance of normality; and, for the field of physical health, injustice insensitivity and having a medical profession were positively associated with a person’s acceptance of normality. Finally, participants’ acceptance of the use of normality in the area of mental health was lower than in the area of physical health.ConclusionsWhat is considered normal has implications for clinical practice, both at an individual and at a policy-level. Acknowledging its normalistic condition, the discipline of medicine has to confront itself with its own contribution to the augmentation of social inequalities through the excessive reliance on the concept of normality. Research that centers the lived experiences of those who are being systematically marginalized because they are deemed abnormal is needed. By empirically elucidating the conceptual relationships between normality in medicine and other variables, we provide points of leverage to deprive normality of its normative power. For medicine, this is needed to first do no harm. (shrink)

Communication about diagnosis and medical treatment for children suffering from life-threatening illnesses is complex. It is a primary step in involving underage patients and families in care and lays the foundation for obtaining parental permission and patient assent for treatment. In practice child participation in care is often difficult to obtain due to patients' different and sometimes fluctuating preferences, but also parents' protective strategies. Physicians may be susceptible to parental wishes to limit information and feel uncomfortable discussing issues related to (...) uncertainty of cure with patients. A qualitative study in Romanian paediatric oncology units was conducted to explore children's involvement from the perspectives of parents and oncologists. Interviews with participants discussed 18 patient cases. Data were transcribed and thematic analysis was used to interpret and mine patients' involvement during treatment. Different facets of patient participation were identified: restricting, widening and enhancing involvement. A fourth category, unintentional involvement, occurred for all patients due to children's observations during long-term hospitalisations and access to Internet. Uncertainty overarched parental attitudes regarding the extent to which children should be included. Physicians usually complied with parental wishes to limit involvement, but together with parents involved patients at least in a practical way. Adults' protective attitude may backfire, as adolescents' online searches often expose patients to worse-case scenarios. Further research should acknowledge the hazards of restricted diagnosis disclosure and develop clinician tools to support families in communicating with patients. This should be paralleled by physician efforts to elicit patients' needs regarding participation. (shrink)

This study provides insight into the experiences of young adults born with variations of sex characteristics to identify aspects of care and social support that need improvement. Semi-structured interviews with intersex youths in Switzerland were analyzed using interpretative, phenomenological analysis. Young adults desire timely, patient-centered information about their diagnoses. Peer support is key to delivering high-quality care but rarely systematically implemented. Intersex youth often face misrepresentation, stigma, and discrimination in medical settings and in society. Increased visibility alone cannot tackle these (...) issues, but a feminist curiosity of care will enable health providers and society to overcome preconceptions of body normativity. (shrink)

This article aims to make a case for the need to sensitize the medical community on the importance of providing sexual health information in the care of intersex adolescents and young adults for whom sexuality and intimacy are sensitive subjects—and to go beyond a narrow focus on surgical outcomes. For this purpose, this article gives voice to the lived experience of “Emma,” a young adult who identifies as intersex. Setting up strong collaboration between medical teams and intersex support groups might (...) be the best way forward to provide high-quality care to youth born with variations of sex characteristics. (shrink)

‘Religion and corporeality’. At first sight, the coordinating conjunction «and» sounds rather odd here because in the vision of many people spirituality and materiality necessarily exclude each other. Still, many scholars have offered abundant evidence that Christianity is a religion of embodiment. Yet, as will become clear from the works of the theologians Erik Peterson and André Guindon, the turn toward the body within Christianity is primarily a turn toward a clothed body. This may explain why the Italian philosopher Giorgio (...) Agamben has argued that our culture, which is heavily influenced by Christian theology, is characterized by the impossibility of nakedness. In his view, we should try to think a possible nakedness of man by liberating it, piece by piece, from the theological fabric which is wrapped around it. The question that I want to raise here is whether such a naked nudity is really a human option. Drawing on Pope John Paul II’s Theology of the Body and introducing the notion of corporeal vulnerability, I will argue that it is not. (shrink)

Viola and Ben, two pediatric oncology patients, need to undergo chemotherapy that might decrease their fertility. Both of them want to participate in the decisions related to their cancer treatment and fertility preservation. Should they be involved, and if so when and how?In many jurisdictions, children are not entitled to provide legally valid consent for medical decisions.1 As a result, others, usually parents, take on the role of surrogate decision-makers who act in their best interest. Still, it is important to (...) keep in mind that the age limit for competence set by legislation does not necessarily coincide with children’s clinical decision-making capacity: some children may be able to make certain health-care... (shrink)