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Published in: Journal of Bioethical Inquiry 1/2019

Open Access 01-03-2019 | Original Research

Medium-Range Narratives as a Complementary Tool to Principle-Based Prioritization in Sweden: Test Case “ADHD”

Authors: Pier Jaarsma, Petra Gelhaus

Published in: Journal of Bioethical Inquiry | Issue 1/2019

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Abstract

In this paper, for the benefit of reflection processes in clinical and in local, regional, and national priority-setting, we aim to develop an ethical theoretical framework that includes both ethical principles and medium-range narratives. We present our suggestion in the particular case of having to choose between treatment interventions for attention deficit hyperactivity disorder (ADHD) and treatment interventions for other conditions or diseases, under circumstances of scarcity. In order to arrive at our model, we compare two distinct ethical approaches: a generalist (principles) approach and a particularist (narratives) approach. Our focus is on Sweden, because in Sweden prioritization in healthcare is uniquely governmentally regulated by the “ethics platform.” We will present a (fictional) scenario to analyse the strengths and weaknesses of the generalist principled perspective of the ethics platform and the particularist perspective of narrative ethics. We will suggest an alternative (moderately particularist) approach to prioritization, which we dub a “principles plus medium-range narratives” approach. Notwithstanding the undeniably central role of principles in distributive justice, we claim that medium-range narratives concerning individuals or groups who stand to benefit or lose from ADHD prioritization practices should also be read or listened to and taken into account at all levels of priority-setting. These narratives are expected to ethically optimize clinical priority-setting, as well as that undertaken at local, regional, and national levels.
Footnotes
1
Preferences are best identified empirically; both quantitative and qualitative research is necessary and relevant. Such research can be ethical either by respecting the perspectives of relevant parties who have no opportunity to be directly involved in the ethical decision-making process (see Habermas 1991 on discourse ethics) or by aiming at the ethical aspect of prioritization, asking for arguments as to why some measures ought to be prioritized over others.
 
2
Translation: PJ.
 
3
This clarification might seem a harmless reformulation of cost-effectiveness, but it implies a general prioritization of less complex interventions (e.g. easier and cheaper to test), as the gold standard of evidence-based medicine is designed according to pharmacological research, not to the requirements of clinical research or the evaluation of psychosocial interventions. It has recently been seriously questioned, as its results have been shown to be significantly influenced by the interests of the sponsor, despite all methodological efforts to provide pure, disinterested evidence (Ahn et al. 2017; Johansson 2017).
 
4
Our emphasis.
 
5
Personal experiences of PG in a regional general psychiatric unit with both out-patient and in-patient hospital ward in Östergötland, Sweden, which is shared independently by colleagues from many other parts of the country.
 
6
See http://​hdr.​undp.​org/​en/​composite/​GII. Accessed November 6, 2017. Sweden’s gender inequality index for 2015 is 0.048. Sweden is ranked #4, only surpassed by the Netherlands (0.044), Denmark (0.041), and Switzerland (0.040).
 
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Metadata
Title
Medium-Range Narratives as a Complementary Tool to Principle-Based Prioritization in Sweden: Test Case “ADHD”
Authors
Pier Jaarsma
Petra Gelhaus
Publication date
01-03-2019
Publisher
Springer Singapore
Published in
Journal of Bioethical Inquiry / Issue 1/2019
Print ISSN: 1176-7529
Electronic ISSN: 1872-4353
DOI
https://doi.org/10.1007/s11673-018-9884-3

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