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Critical paediatric bioethics and the treatment of short stature: an interdisciplinary study
Linköping University, Department of Culture and Communication. Linköping University, Faculty of Arts and Sciences.
2019 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Several studies have argued that there is a correlation between short stature and negative experiences and characteristics, such as social discrimination, economic disadvantage, health problems (especially for men). The idea that short men have a disadvantage in social interactions and in partner choices is also widespread in popular culture and common knowledge. It is now possible to use recombinant human growth hormone (hGH) to treat children with idiopathic short stature (ISS), namely children who are shorter than average for unknown medical reasons. Critics argue that there is a lack of evidence of both psychological distress caused by short stature and the efficacy of the treatment in increasing children’s well-being. This controversy is reflected in international drug evaluations: while the Food and Drug Administration (FDA) in the US granted marketing authorisation for hGH for children with ISS in 2003, the European Medicines Agency (EMA) refused it in 2007.

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.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2019. , p. 80
Series
Linköping Studies in Arts and Sciences, ISSN 0282-9800 ; 764
Keywords [en]
critical paediatric bioethics; growth hormone treatment; medicalisation; phenomenology of the body; critical disability studies; short stature; drug regulations
National Category
Medical Ethics
Identifiers
URN: urn:nbn:se:liu:diva-155772DOI: 10.3384/diss.diva-155772ISBN: 9789176851159 (print)OAI: oai:DiVA.org:liu-155772DiVA, id: diva2:1299565
Public defence
2019-04-11, TEMCAS, Hus Tema, Campus Valla, Linköping, 11:15 (English)
Opponent
Supervisors
Available from: 2019-03-27 Created: 2019-03-27 Last updated: 2019-04-05Bibliographically approved
List of papers
1. Medicalising short children with growth hormone? Ethical considerations of the underlying sociocultural aspects
Open this publication in new window or tab >>Medicalising short children with growth hormone? Ethical considerations of the underlying sociocultural aspects
2018 (English)In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 21, no 2, p. 243-253Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
SPRINGER, 2018
Keywords
Bioethics; Children; Endocrinology; Growth hormone treatment; Medicalisation; Medical sociology; Philosophy of medicine
National Category
Medical Ethics
Identifiers
urn:nbn:se:liu:diva-148244 (URN)10.1007/s11019-017-9798-6 (DOI)000432534200011 ()28852938 (PubMedID)
Note

Funding Agencies|Phoenix Erasmus+, Erasmus Mundus Joint Doctoral Programme on Dynamics of Health and Welfare of the European Union

Available from: 2018-06-05 Created: 2018-06-05 Last updated: 2019-03-27
2. How sociophenomenology of the body problematises the ‘problem-oriented approach’ to growth hormone treatment
Open this publication in new window or tab >>How sociophenomenology of the body problematises the ‘problem-oriented approach’ to growth hormone treatment
2018 (English)In: Medical Humanities, ISSN 1468-215X, E-ISSN 1473-4265Article in journal (Refereed) Epub ahead of print
Abstract [en]

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.

Place, publisher, year, edition, pages
BMJ Publishing Group Ltd, 2018
National Category
Medical Ethics
Identifiers
urn:nbn:se:liu:diva-155773 (URN)10.1136/medhum-2018-011548 (DOI)30478090 (PubMedID)2-s2.0-85057584066 (Scopus ID)
Available from: 2019-03-26 Created: 2019-03-26 Last updated: 2019-04-01Bibliographically approved

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Murano, Maria Cristina

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