Critical paediatric bioethics and the treatment of short stature: an interdisciplinary study

The research presented here had two aims: first, to identify and analyse the norms, values and assumptions about short stature and the use of hGH treatment for children with ISS, found within sociocultural, philosophical and regulatory discussions of these, and within narrated lived experiences of short stature. Second, to critically and reflectively discuss how these analyses contribute to bioethical debates on the use of hGH treatment for children with ISS. It employs what it calls a critical paediatric bioethics theoretical approach, which deems as important to carefully analyse different reasoning, conceptualisations and arguments around the object of study, through a self-reflective analysis that is also sceptical about other forms of problematisation, and that combines philosophical analyses while being open to social implications and drawing upon empirical methods.

The first article proposes a critical understanding of medicalisation as both a concept and a phenomenon, and explores what insights such critical understanding brings to ethical discussions about hGH for ISS. It argues that three main ethical issues concern the medicalisation of short stature: the downplayed role of the qualitative dimension of short stature, the justification of the treatment (as sometimes based on uncritically assumed social beliefs and unrealistic parental expectations), and possible misconduct of stakeholders.

The second article examines the arguments for and against granting marketing authorisation of hGH treatment for the indication of ISS presented in selected FDA and EMA documents. It combines argumentative analysis with an approach to policy analysis called ‘what’s the problem represented to be’ and focuses on underlying assumptions and presuppositions about short stature and hGH treatment for ISS. It then discusses these arguments through the relational, experiential and cultural understandings of disability, and argues that the choice about whether to give hGH is not merely a choice based on efficacy and safety, but requires an examination of the values that we transmit by that choice.

The third article examines how and why attendance to lived experiences of height is needed in bioethical and biomedical discussions of hGH treatment for children with ISS. It first describes what it defines as the ‘problem-oriented’ approach to the debate about hGH treatment for children with ISS. It then offers a sociophenomenological analysis of whether and, if so, when and how, height matters to the interviewed people in the Netherlands who are shorter than average without any known medical reasons. The sociophenomenological analysis shows the richness of meanings of lived experiences of short stature that cannot be captured by the problem-oriented approach, and suggests complementing clinical practices with narrative approaches.

This research contributes to the ethical debate about using hGH for children with ISS, setting a critical gaze onto the social perception of short stature, highlighting some ethical challenges met by stakeholders involved at different levels (such as families, medical professionals and policy makers), and providing new insights into how to address these ethical issues. It is, therefore, of interest to stakeholders, bioethicists and lay people willing to explore alternative ways to address such bioethical dilemmas, and other paediatric interventions that aim to normalise children’s bodily characteristics.