Medicalising short children with growth hormone? Ethical considerations of the underlying sociocultural aspects
Medicalising short children with growth hormone? Ethical considerations of the underlying sociocultural aspects
Maria Cristina Murano 0
0 Department of Culture and Communication, Linköping University , 581 83 Linköping , Sweden
1 Maria Cristina Murano
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.
Bioethics; Children; Endocrinology; Growth hormone treatment; Medicalisation; Medical sociology; Philosophy of medicine
Introduction
In 2003, the Food and Drug Administration (FDA) approved
the use of growth hormone (hGH) treatment for Idiopathic
Short Stature (ISS) children, namely children shorter than
average due to an unknown medical cause. Although there
is no exact data on the number of children who receive the
treatment nowadays in the US, it seems that, even before
2003, around one in three of all children treated were
idiopathic
(Voss 2006)
. In 2007, the European Medicines
Agency (EMA) discussed and refused treatment for ISS
children
(EMA 2007)
. While there is approval for the use of
hGH for recognised medical conditions, ISS has been a
matter of debate
(Allen and Fost 2004; Voss and Sandberg 2004;
Gill 2006; Voss 2006; Rosenbloom 2010)
and there is still
disagreement among paediatric endocrinologists in the US
on whether and when they should be treated
(Frindik et al.
2010)
. The main concerns are: the high costs of treatment,
the uncertainties about long-term side effects, and the
limited (and highly subjective) height gain in adulthood. One of
the main reasons to intervene is the belief that short stature
might cause social and psychological burdens
(Verweij and
Kortmann 1997; Voss and Sandberg 2004)
but opponents
hold that being short is neither a medical condition nor a
disease and, thus, the therapy represents cosmetic
endocrinology
(Voss and Sandberg 2004; Sandel 2007; Rosenbloom
2010)
.
Against this background, this study aims at broadening
the ethical debate over the reasons for and against hGH
treatment, to include considerations of the sociocultural
phenomenon of the medicalisation of short stature, based
on a critical understanding of the concept of medicalisation.
To do so, it draws upon perspectives of bioethics, medical
sociology, philosophy of medicine and medical literature.
Let me now better define what I mean by medicalisation.
Medicalisation as a phenomenon and as a concept
Medicalisation has been an object of research since the
1970s. Initially, the literature focused on the consequences
of the increasing relevance that medicine has in society, both
as a practice and as an institution, and it was regarded as
an alarming phenomenon. For example, Irving
Zola (1972)
was concerned that the increasing possibility of intervening
with medicine in lifestyle or conditions that previously were
‘taboo areas’ (e.g. drug addiction and pregnancy) would
significantly increase individual responsibility towards health
conditions
(Zola 1972)
. Ivan
Illich (1974)
, instead, believed
that medical practice would transform human problems into
technical ones and, thus, would make people less capable
of dealing with these problems. Finally, Michel Foucault,
during a lecture in 1974, defined modern medicine as a
social practice and a bio-political strategy
(Foucault 1988)
.
He then illustrated the history of medicalisation of
societies and populations, starting from the nineteenth century,
which he considered the time of birth of social med (...truncated)