The "Commitment Model" of Clinical Ethics Consultation: Revisiting the Meaning of Expertise and Professionalization.

While in Europe the debate over clinical ethics consultants' expertise and professionalization is ongoing, in France it remains rather marginal. In this article, we illustrate how the "commitment model" adopted by the Clinical Ethics Center of the Greater Paris University Hospitals situates itself in such a debate. We first present the commitment model by drawing upon an emblematic case of consultation, and then describe, in turn, its understandings of democratic expertise and of the professionalization of clinical ethics consultation. Accordingly, the commitment model advocates against individual consultants' certification, but it does not rule out the need for training nor a certain form of professionalization of clinical ethics consultation services.

Clinical Ethics Consultation during the First COVID-19 Lock Down in France: The "Commitment Model": Balancing General Questions and Individual Cases.

During the first outbreak of COVID-19, the French governmental advisory council on bioethics suggested the need to support healthcare providers with ad hoc "ethical support units." Several units engaged in such endeavors across the country. This article outlines some methodological considerations made by the Cochin Hospital Clinical Ethics Center (the Cec). The Cec was founded in 2002 to provide clinical ethics support services. While its approach was inspired by North American models, it was shaped by and adapted to the French context. This approach is called the "Commitment Model," as it draws upon societal engagement in all phases of its service and places the perspectives of individual patients at its core. During the first outbreak of COVID-19 pandemic, the Cec received a greater number of requests about recurring care practices or ethical guidelines and recommendations than single clinical ethics dilemmas. Through the presentation of an illustrative consultation, this article describes how, while the Cec made some adjustments to its service for the emergency situation, it preserved its case-by-case approach rather than engaging in what it calls organizational and institutional ethics. Such an approach allowed the Cec to refocus attention to individual patients and their unique circumstances and to support decision makers by the use of case-by-case, problematized, ethical reflections.

A Disability Bioethics Reading of the FDA and EMA Evaluations on the Marketing Authorisation of Growth Hormone for Idiopathic Short Stature Children.

The diagnosis of idiopathic short stature (ISS) refers to children who are considerably shorter than average without any identified medical reason. The US Food and Drug Administration (FDA) authorised marketing of recombinant human growth hormone (hGH) for ISS in 2003, while the European Medicines Agency (EMA) refused it in 2007. This paper examines the arguments for these decisions as detailed in selected FDA and EMA documents. It combines argumentative analysis with an approach to policy analysis called 'What's the problem represented to be'. It argues that the FDA presents its approval as an argument for equity of access to the treatment (given that hGH was already authorised for other indications), describing short stature as a potential disadvantage, and assuming that height normalisation is a clinically meaningful result. The EMA, instead, refuses marketing authorisation with an argument that there is an imbalance of risks and benefits, describing ISS as a healthy condition, and arguing that hGH should provide some psychosocial and/or quality of life benefits to children with ISS other than height gain. This paper then discusses how these arguments could be read through different models of disability, particularly through the medical model of disability and the relational, experiential, and cultural understandings of disability.

Parental Concerns on Short Stature: A 15-Year Follow-Up.

OBJECTIVES: To compare parental attitudes about short stature over time and determine possible factors that predict changes in attitudes. STUDY DESIGN: At baseline (1993-1994), we surveyed parents about their attitudes regarding their children's height. We compared parents of children (aged 4-15 years) referred to endocrinologists (referred, 154) with those of children with heights <10th percentile seen by pediatricians during regular visits (control, 240). At follow-up (2008-2009), 103 control and 98 referred parents completed a similar survey. We then made a logistic regression analysis to observe changes in perception. Primary variables included self-esteem, treatment by peers, and ability to cope with current height. RESULTS: At baseline, referred parents perceived a worse impact of short stature on their children than did controls. At follow-up, instead, referred parents were 3.8 times more likely to report improvement in self-esteem, 2.4 times more likely to report improved treatment from peers, and 5.7 times more likely to report overall ability to cope with height than were unreferred parents. Perception of psychosocial improvement was greater in the referred than the control group. Referral was a stronger predictor of an improved follow-up response than patients' current height or change in height. CONCLUSIONS: While incorporating parental attitudes into management decisions, clinicians should be aware that parental perceptions may change over time and that referral itself may lead parents to perceive psychosocial improvements over time.

How sociophenomenology of the body problematises the 'problem-oriented approach' to growth hormone treatment.

This article examines how people who are shorter than average make sense of their lived experience of embodiment. It offers a sociophenomenological analysis of 10 semistructured interviews conducted in the Netherlands, focusing on if, how, and why height matters to them. It draws theoretically on phenomenological discussions of lived and objective space, intercorporeality and norms about bodies. The analysis shows that height as a lived phenomenon (1) is active engagement in space, (2) coshapes habituated ways of behaving and (3) is shaped by gendered norms and beliefs about height. Based on this analysis, the article challenges what we label as the 'problem-oriented approach' to discussions about growth hormone treatment for children with idiopathic short stature. In this approach, possible psychosocial disadvantages or problems of short stature and quantifiable height become central to the ethical evaluation of growth hormone treatment at the expense of first-hand lived experiences of short stature and height as a lived phenomenon. Based on our sociophenomenological analysis, this paper argues that the rationale for giving growth hormone treatment should combine medical and psychological assessments with investigations of lived experiences of the child. Such an approach would allow considerations not only of possible risks or disadvantages of short stature but also of the actual ways in which the child makes sense of her or his height.

[Hormone treatment for short statured children? For a critical approach to sociocultural norms about short stature]. / Hormone de croissance chez les enfants de petite taille ? - Pour une approche critique des normes socioculturelles relatives à la petite taille.

Children's growth and height are thoroughly and regularly scrutinized by paediatricians and parents alike. A general consensus in treating short statured children with growth hormone (GH) exists when short stature is one of the symptoms of their pathological condition (e.g. Turner syndrome, small for gestational age, chronic renal insufficiency and Prader-Willi syndrome). Idiopathic short stature is instead a controversial diagnostic because it is based on the exclusion of any known medical causes of short stature. By proposing a critical reading of sociocultural norms about short stature, this article suggests that it is important to give a voice to concerned children and that the ethical debate about GH treatment should investigate the best ways in which children can take part in the decision-making process.

TITLE: Hormone de croissance chez les enfants de petite taille ? - Pour une approche critique des normes socioculturelles relatives à la petite taille. ABSTRACT: Un consensus général existe pour traiter les enfants de petite taille par l'hormone de croissance (GH) dans le cas où ceux-ci présentent une maladie dont l'un des symptômes est la petite taille. Néanmoins, la petite taille idiopathique (c'est-à-dire la petite taille qui n'a pas de cause médicale connue) demeure un diagnostic controversé. En proposant une relecture critique des normes socio-culturelles négatives liées à la petite taille, cet article appelle à donner plus d'importance à la parole des enfants concernés et à mettre l'accent, dans le débat éthique sur l'hormone de croissance, sur les meilleures façons d'associer les enfants à la prise de décisions sur le traitement.

The Strange Tale of Three Identical Strangers: Cinematic Lessons in Bioethics.

Tim Wardle's 2018 documentary film Three Identical Strangers is an exploration of identity, family, and loss. It's also about nature versus nurture and the boundaries of ethically permissible research, particularly research involving children. The film tells the story of identical triplets who were separated soon after birth in 1961. A different family adopted each boy, without being told that their son had two identical brothers. The adoption agency responsible for finding the families was collaborating with a group of researchers working on a study about … something. Three Identical Strangers details the boys' fight to obtain information about the study and for closure. But while the film may have received rave reviews, it left us feeling uneasy. We came away with two sets of questions, one having to do with the story that the film documents and the second with the ethics of filmmaking itself.

Medicalising short children with growth hormone? Ethical considerations of the underlying sociocultural aspects.

In 2003, the Food and Drug Administration approved the use of growth hormone treatment for idiopathic short stature children, i.e. children shorter than average due to an unknown medical cause. Given the absence of any pathological conditions, this decision has been contested as a case of medicalisation. The aim of this paper is to broaden the debate over the reasons for and against the treatment, to include considerations of the sociocultural phenomenon of the medicalisation of short stature, by means of a critical understanding of the concept of medicalisation. After defining my understanding of medicalisation and describing both the treatment and the condition of idiopathic short stature, I will problematise two fundamental issues: the medical/non-medical distinction and the debate about the goals of medicine. I will analyse them, combining perspectives of bioethics, medical sociology, philosophy of medicine and medical literature, and I will suggest that there are different levels of normativity of medicalisation. Ultimately, this study shows that: (1) the definition of idiopathic short stature, focusing only on actual height measurement, does not provide enough information to assess the need for treatment or not; (2) the analysis of the goals of medicine should be broadened to include justifications for the treatment; (3) the use of growth hormone for idiopathic short stature involves strong interests from different stakeholders. While the treatment might be beneficial for some children, it is necessary to be vigilant about possible misconduct at different levels of medicalisation.