The term “normal” is culturally ubiquitous and conceptually vague. Interestingly, it appears to be a descriptive-normative-hybrid which, unnoticedly, bridges the gap between the descriptive and the normative. People’s beliefs about normality are descriptive and prescriptive and depend on both an average and an ideal. Besides, the term has generally garnered popularity in medicine. However, if medicine heavily relies on the normal, then it should point out how it relates to the concept of health or to statistics, and what, after all, (...) normal means. Most importantly, the normativity of the normal needs to be addressed. Since the apparently neutral label “normal” can exclude, stigmatize, and marginalize people who are defined in contrast to it as abnormal, health professionals should think twice before using the term with patients. The present critical perspective advocates against using the term “normal,” as long as no understanding of a person’s individual normality has been attained. It advocates for the right to autonomously determine one’s own normality. For health professionals I do not see worthwhile benefits of subscribing to the concept of “normality” and imposing it on their patients. But I do see many risks. (shrink)

Parents frequently attempt to shield their children from distressing prognostic information. Pediatric oncology providers sometimes follow parental request for non-disclosure of prognostic information to children, invoking what we call the stability of the family argument. They believe that if they inform the child about terminal prognosis despite parental wishes, cohesion and family structure will be severely hampered. In this paper, we argue against parental request for non-disclosure. Firstly, we present the stability of the family argument in more detail. We, then, (...) set out the (conceptual, legal, systemic) entitativity of the family and the kind of value the stability of the family argument assumes, before we set on to critically evaluate the argument. Our analysis shows that disclosure of prognostic information to children does not necessarily destabilize the family to a greater extent than non-disclosure. In fact, a systemic perspective suggests that mediated disclosure is more likely to result in a (long-term) stability of the family than non-disclosure. It is in the interest of the family to resist the initial aversive reaction to delivering bad news. In the final part, we draw a set of recommendations on how to facilitate decision-making in face of parental request for non-disclosure. (shrink)

This paper addresses psychological factors that might interfere with informed consent on the part of stable patients as potential early-phase clinical trial participants. Thirty-six semistructured interviews with patients who had either diabetes or gout were conducted. We investigated stable patients’ attitudes towards participating in a fictitious first-in-human trial of a novel intervention. We focused on an in-depth analysis of those statements and explanations that indicated the existence of psychological factors impairing decision-making capacity. Three main themes emerged: insufficient comprehension of the (...) inherent logic of clinical trials (actual comprehension), the recourse to trust over comprehension (prioritization of trust), and visceral factors that override deliberative process (visceral factors). Overall, our results indicate a limited psychological capacity on the part of stable patients to meet the requirements of informed consent as set by Declaration of Helsinki. A redesigned informed consent procedure should take account of these psychological realities. (shrink)

The goal is to present how shared decision-making in paediatric oncology occurs from the viewpoints of parents and physicians. Eight Swiss Pediatric Oncology Group centres participated in this prospective study. The sample comprised a parent and physician of the minor patient. Surveys were statistically analysed by comparing physicians’ and parents’ perspectives and by evaluating factors associated with children’s actual involvement. Perspectives of ninety-one parents and twenty physicians were obtained for 151 children. Results indicate that for six aspects of information provision (...) examined, parents’ and physicians’ perceptions differed. Moreover, parents felt that the children were more competent to understand diagnosis and prognosis, assessed the disease of the children as worse, and reported higher satisfaction with decision-making on the part of the children. A patient’s age and gender predicted involvement. Older children and girls were more likely to be involved. In the decision-making process, parents held a less active role than they actually wanted. Physicians should take measures to ensure that provided information is understood correctly. Furthermore, they should work towards creating awareness for systematic differences between parents and physicians with respect to the perception of the child, the disease, and shared decision-making. (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)

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)

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)

Background While the theoretical benefits and harms of Artificial Intelligence (AI) have been widely discussed in academic literature, empirical evidence remains elusive regarding the practical ethical challenges of developing AI for healthcare. Bridging the gap between theory and practice is an essential step in understanding how to ethically align AI for healthcare. Therefore, this research examines the concerns and challenges perceived by experts in developing ethical AI that addresses the healthcare context and needs. Methods We conducted semi-structured interviews with 41 (...) AI experts and analyzed the data using reflective thematic analysis. Results We developed three themes that expressed the considerations perceived by experts as essential for ensuring AI aligns with ethical practices within healthcare. The first theme explores the ethical significance of introducing AI with a clear and purposeful objective. The second theme focuses on how experts are concerned about the tension that exists between economic incentives and the importance of prioritizing the interests of doctors and patients. The third theme illustrates the need to develop context-sensitive AI for healthcare that is informed by its underlying theoretical foundations. Conclusions The three themes collectively emphasized that beyond being innovative, AI must genuinely benefit healthcare and its stakeholders, meaning AI also aligns with intricate and context-specific healthcare practices. Our findings signal that instead of narrow product-specific AI guidance, ethical AI development may need a systemic, proactive perspective that includes the ethical considerations (objectives, actors, and context) and focuses on healthcare applications. Ethically developing AI involves a complex interplay between AI, ethics, healthcare, and multiple stakeholders. (shrink)

While the technologies that enable Artificial Intelligence (AI) continue to advance rapidly, there are increasing promises regarding AI’s beneficial outputs and concerns about the challenges of human–computer interaction in healthcare. To address these concerns, institutions have increasingly resorted to publishing AI guidelines for healthcare, aiming to align AI with ethical practices. However, guidelines as a form of written language can be analyzed to recognize the reciprocal links between its textual communication and underlying societal ideas. From this perspective, we conducted a (...) discourse analysis to understand how these guidelines construct, articulate, and frame ethics for AI in healthcare. We included eight guidelines and identified three prevalent and interwoven discourses: (1) AI is unavoidable and desirable; (2) AI needs to be guided with (some forms of) principles (3) trust in AI is instrumental and primary. These discourses signal an over-spillage of technical ideals to AI ethics, such as over-optimism and resulting hyper-criticism. This research provides insights into the underlying ideas present in AI guidelines and how guidelines influence the practice and alignment of AI with ethical, legal, and societal values expected to shape AI in healthcare. (shrink)

Evidence shows that during birth women frequently experience unconsented care, coercion, and a loss of autonomy. For many countries, this contradicts both the law and medical ethics guidelines, which emphasize that competent and fully informed women’s autonomy must always be respected. To better understand this discordance, we empirically describe perinatal maternity care providers’ and women’s moral deliberation surrounding coercive measures during birth. Data were obtained from 1-on-1 interviews with providers (N = 15) and women (N = 14), and a survey (...) of women (N = 118). Analyses focused on an in-depth exploration of responses to a question on the permissibility of coercion in birth whose wording was borrowed from a Swiss medical-ethical guideline. Reasons for and against a principle permissibility of coercive measures in birth were grouped into clusters of reasons to build a coherent explanatory framework. Factors considered morally relevant when deliberating on coercion included women’s decisional capacity, beneficence/non-maleficence, authority through knowledge on the part of providers, flaws of the medical system, or the imperative to protect the most vulnerable. Also, we identified various misconceptions, such as the conviction that a pathological birth can justify coercion or that fetal rights can justifiably infringe on women’s autonomy. Information and education on the issue of coercion in birth are urgently needed to enable women to fully exercise their reproductive autonomy, to prevent long-term adverse health outcomes of women and children, and to reconcile the medical vigilance which has lead to a reduction of perinatal morbidity and mortality with women’s enfranchisement in their own care. (shrink)