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: 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; the analysis of the goals of medicine should be broadened to include justifications for the treatment; 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. (shrink)

Over the last three quarters of a century, international guidelines and regulations have undergone significant changes in how children are problematised as participants in biomedical research. While early guidelines enacted children as vulnerable subjects with diminished autonomy and in need of special protection, beginning in the early 2000s, international regulatory frameworks defined the paediatric population as vulnerable due to unaddressed public health needs. More recently, ethical recommendations have promoted the active engagement of minors as research partners. In this paper, I (...) adopt a post-structuralist approach to policy analysis to examine deep-seated assumptions and presuppositions underlying the changes in the problematisation of children as biomedical research participants over time. While biomedical research ethics focuses on the autonomy and vulnerability of minors, ethical guidelines are situated in specific sociocultural contexts, shaped, among other things, by contingent public health needs and changing conceptions of the value of research and science for society. In the process, I demonstrate the challenge of moving away from an approach that in taking adults as the model overshadows the complexity of children’s lived experiences as well as their personal, cultural, and social lives. The lack of acknowledgement of this complexity makes children vulnerable to epistemic injustice, which is particularly crucial to address in public involvement initiatives. (shrink)

The diagnosis of idiopathic short stature refers to children who are considerably shorter than average without any identified medical reason. The US Food and Drug Administration authorised marketing of recombinant human growth hormone for ISS in 2003, while the European Medicines Agency 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, 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. (shrink)

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. (shrink)

During the first outbreak of COVID-19, the F rench 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. (shrink)

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. (shrink)