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How sociophenomenology of the body problematises the ‘problem-oriented approach’ to growth hormone treatment
Linköpings universitet, Institutionen för kultur och kommunikation. Linköpings universitet, Filosofiska fakulteten. Medicine, Science, Health and Society (Cermes3), School for Advanced Studies in the Social Sciences (EHESS), Paris, France ; Center for Bioethics, Children’s Mercy Kansas City, Kansas City, MO, USA.
Department of Culture Studies, Tilburg University, Tilburg, The Netherlands.
Linköpings universitet, Institutionen för tema, Tema teknik och social förändring. Linköpings universitet, Filosofiska fakulteten.
2018 (Engelska)Ingår i: Medical Humanities, ISSN 1468-215X, E-ISSN 1473-4265Artikel i tidskrift (Refereegranskat) 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.

Ort, förlag, år, upplaga, sidor
BMJ Publishing Group Ltd, 2018.
Nationell ämneskategori
Medicinsk etik
Identifikatorer
URN: urn:nbn:se:liu:diva-155773DOI: 10.1136/medhum-2018-011548PubMedID: 30478090Scopus ID: 2-s2.0-85057584066OAI: oai:DiVA.org:liu-155773DiVA, id: diva2:1299161
Tillgänglig från: 2019-03-26 Skapad: 2019-03-26 Senast uppdaterad: 2019-04-01Bibliografiskt granskad
Ingår i avhandling
1. Critical paediatric bioethics and the treatment of short stature: an interdisciplinary study
Öppna denna publikation i ny flik eller fönster >>Critical paediatric bioethics and the treatment of short stature: an interdisciplinary study
2019 (Engelska)Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
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.

Ort, förlag, år, upplaga, sidor
Linköping: Linköping University Electronic Press, 2019. s. 80
Serie
Linköping Studies in Arts and Sciences, ISSN 0282-9800 ; 764
Nyckelord
critical paediatric bioethics; growth hormone treatment; medicalisation; phenomenology of the body; critical disability studies; short stature; drug regulations
Nationell ämneskategori
Medicinsk etik
Identifikatorer
urn:nbn:se:liu:diva-155772 (URN)10.3384/diss.diva-155772 (DOI)9789176851159 (ISBN)
Disputation
2019-04-11, TEMCAS, Hus Tema, Campus Valla, Linköping, 11:15 (Engelska)
Opponent
Handledare
Tillgänglig från: 2019-03-27 Skapad: 2019-03-27 Senast uppdaterad: 2019-04-05Bibliografiskt granskad

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