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• W2136862102 abstract "In an ideal world of growth hormone (GH) therapy for ‘idiopathic short stature’ (ISS), there is full catch-up growth for all, improvement of quality of life, and enough evidence on dosage, safety, and cost-effectiveness.In the real world, however, as Laventhal et al. [1] describe in their opinion article in this issue, the growth response is variable, and there is still lack of evidence for a psychosocial benefit and long-term safety. The authors refer to the French study published in January 2012 [2] that reported increased mortality in GH-treated children, including increased deaths due to bone tumors and cerebrovascular diseases. The French study prompted Laventhal et al. [1] to discuss whether it is reasonable for children to be exposed to these risks in pursuit of this elective treatment, particularly if the psychosocial benefit of added height is questionable. They refer to the ‘best interest’ standard as the standard for decision-making in this situation, and question the absoluteness of parental discretion to demand elective GH therapy. The ‘best interest’ standard has become the prevailing standard in pediatric decision-making. Like most of bioethics’ ventures, best interests can be formulated in ways that sound appropriate or even compelling. Despite many attempts, however, an ‘objective’ best interest standard has not yet been formulated. At most, an ‘intersubjective’ alternative is described. The most used version of this intersubjective alternative is Kopelman’s standard of reasonableness. This standard ‘requires us to focus on the child and select wisely from among alternatives [...]. It instructs us to try and pick the option that most informed, rational people of good will would regard as maximizing the child’s net benefits and minimizing the net harms to the child without ignoring the rights, needs, and interests of others’ [3]. In this way, a best interest standard seems reasonable to use when its purpose is to offer good and practical guidance about how to make decisions for those unable to decide on their own. And it is true that little controversy exists regarding what to do when medical interventions are available that are reliably expected to prevent serious, far-reaching loss of the patient’s health at a reasonable cost, such as treating bacterial pneumonia with antibiotics. But what is disturbing is that Laventhal et al. [1] show in their article that even calling on ‘informed, rational people of good will’ does not solve the problem of what the best interest standard should require when the actual clinical practice is so complex and blurred as it is in prescribing GH in ISS. In the context of ISS, the rational people that need to decide (parents and doctors) act on strongly held (cultural) beliefs, and are not convinced by empirical evidence. How should we then weigh the risks and benefits for GH treatment when: (1) cultural factors have such a great influence; (2) discord remains over whether short stature actually is a disease with such psychosocial burden that it requires GH therapy; (3) there is such a variable growth response, and (4) long-term safety is still unknown? Laventhal et al. [1] describe this complexity as a tango for three: widely held beliefs about the harms of being short and the benefits of being taller drive families’ desire for GH, physicians’ willingness to prescribe it, and regulators’ willingness to approve its use. In their article the authors do not mention a fourth dancer: the pharmaceutical companies. Marketing strategies of these companies result in intense doctor-industry relationships [4], and could influence doctors’ prescribing practices. Furthermore, we know that the pharmaceutical companies use ‘disease mongering’ to change public perceptions about health and illness, for example by treating personal problems (including short stature?) as medical ones to widen markets for their drugs [5].Due to the complexity of the ISS context and due to our pluralistic cultural beliefs about child welfare and parental discretion, it is impossible to present a uniform interpretation of what is in the best interest of a child with ISS. When views differ widely, the question inevitably arises whose perspective should prevail. In order to avoid discussions about who is in power to apply an abstract standard of best interests, Laventhal et al. [1] rightly introduce a ‘shared decision-making model’. The intention of shared decision-making in the ISS context would be to openly enter into a conversation with the parents and child to (1) recognize personal views by parents, patient, and the treating doctor on short stature; (2) understand family demands and pressures; (3) discuss the substantial role of cultural factors, and (4) exchange the latest scientific evidence, including complete information about the range of possible responses and a summary of conflicting results on adverse effects of treatment. The eventual goal would be that all parties involved, including the patient (when possible), come to a rational agreement about shared goals and decisions to be made. For older children and adolescents, this would also mean that a case-by-case evaluation of decision-making capacity should be performed. Thus, justice may be done to the ethical ideal of respect for the developing autonomy of children in making their own decisions.It is of course a demanding requirement to identify personal views, cultural factors, and other powers that influence decision-making in this practice. But it is also an ethical obligation for the treating doctor to describe the complex landscape of GH therapy for ISS [6]. The intention to act in the best interest of the child should be guided by a standard that understands best interests as a matter that comes about through honest consultation.The author has no conflicts of interest to declare. There are no financial relationships relevant to this article to disclose and there has been no external funding." @default.
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• W2136862102 date "2013-01-01" @default.
• W2136862102 modified "2023-09-26" @default.
• W2136862102 title "A Tango for Four: Deciding on Growth Hormone Therapy in Idiopathic Short Stature" @default.
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• W2136862102 doi "https://doi.org/10.1159/000346372" @default.
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