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Points to consider for prioritizing clinical genetic testing services: a European consensus process oriented at accountability for reasonableness
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2015 (English)In: Eur J Hum Genet, Vol. 23, no 6, p. 729-35Article in journal (Refereed) Published
Abstract [en]

Given the cost constraints of the European health-care systems, criteria are needed to decide which genetic services to fund from the public budgets, if not all can be covered. To ensure that high-priority services are available equitably within and across the European countries, a shared set of prioritization criteria would be desirable. A decision process following the accountability for reasonableness framework was undertaken, including a multidisciplinary EuroGentest/PPPC-ESHG workshop to develop shared prioritization criteria. Resources are currently too limited to fund all the beneficial genetic testing services available in the next decade. Ethically and economically reflected prioritization criteria are needed. Prioritization should be based on considerations of medical benefit, health need and costs. Medical benefit includes evidence of benefit in terms of clinical benefit, benefit of information for important life decisions, benefit for other people apart from the person tested and the patient-specific likelihood of being affected by the condition tested for. It may be subject to a finite time window. Health need includes the severity of the condition tested for and its progression at the time of testing. Further discussion and better evidence is needed before clearly defined recommendations can be made or a prioritization algorithm proposed. To our knowledge, this is the first time a clinical society has initiated a decision process about health-care prioritization on a European level, following the principles of accountability for reasonableness. We provide points to consider to stimulate this debate across the EU and to serve as a reference for improving patient management.

Place, publisher, year, edition, pages
2015. Vol. 23, no 6, p. 729-35
Keywords [en]
Clinical Laboratory Services/ethics/*legislation & jurisprudence/standards, Consensus, Europe, Genetic Testing/ethics/*legislation & jurisprudence/standards, Social Responsibility
National Category
Medical and Health Sciences
Research subject
Bioethics
Identifiers
URN: urn:nbn:se:uu:diva-342720ISBN: 1476-5438 (Electronic) 1018-4813 (Linking) OAI: oai:DiVA.org:uu-342720DiVA, id: diva2:1186612
Note

Severin, Franziska Borry, Pascal Cornel, Martina C Daniels, Norman Fellmann, Florence Victoria Hodgson, Shirley Howard, Heidi C John, Jurgen Kaariainen, Helena Kayserili, Hulya Kent, Alastair Koerber, Florian Kristoffersson, Ulf Kroese, Mark Lewis, Celine Marckmann, Georg Meyer, Peter Pfeufer, Arne Schmidtke, Jorg Skirton, Heather Tranebjaerg, Lisbeth Rogowski, Wolf H eng Research Support, Non-U.S. Gov't England 2014/09/25 06:00 Eur J Hum Genet. 2015 Jun;23(6):729-35. doi: 10.1038/ejhg.2014.190. Epub 2014 Sep 24.

Available from: 2018-02-28 Created: 2018-02-28 Last updated: 2018-02-28

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http://www.ncbi.nlm.nih.gov/pubmed/25248395

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