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Points to consider for prioritizing clinical genetic testing services: a European consensus process oriented at accountability for reasonableness.

Severin, Franziska; Borry, Pascal; Cornel, Martina C; Daniels, Norman; Fellmann, Florence; Victoria Hodgson, Shirley; Howard, Heidi C; John, Jürgen; Kääriäinen, Helena and Kayserili, Hülya, et al. (2015) In European Journal of Human Genetics 23(6). p.729-735
Abstract
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... (More)
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.European Journal of Human Genetics advance online publication, 24 September 2014; doi:10.1038/ejhg.2014.190. (Less)
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European Journal of Human Genetics
volume
23
issue
6
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729 - 735
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Nature Publishing Group
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  • pmid:25248395
  • wos:000354474600009
  • scopus:84929282608
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1476-5438
DOI
10.1038/ejhg.2014.190
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English
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b1eeba3a-9fe6-49a6-a45b-5fd1f289b184 (old id 4691027)
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http://www.ncbi.nlm.nih.gov/pubmed/25248395?dopt=Abstract
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2014-10-08 15:43:27
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@article{b1eeba3a-9fe6-49a6-a45b-5fd1f289b184,
  abstract     = {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.European Journal of Human Genetics advance online publication, 24 September 2014; doi:10.1038/ejhg.2014.190.},
  author       = {Severin, Franziska and Borry, Pascal and Cornel, Martina C and Daniels, Norman and Fellmann, Florence and Victoria Hodgson, Shirley and Howard, Heidi C and John, Jürgen and Kääriäinen, Helena and Kayserili, Hülya and Kent, Alastair and Koerber, Florian and Kristoffersson, Ulf and Kroese, Mark and Lewis, Celine and Marckmann, Georg and Meyer, Peter and Pfeufer, Arne and Schmidtke, Jörg and Skirton, Heather and Tranebjærg, Lisbeth and Rogowski, Wolf H},
  issn         = {1476-5438},
  language     = {eng},
  number       = {6},
  pages        = {729--735},
  publisher    = {Nature Publishing Group},
  series       = {European Journal of Human Genetics},
  title        = {Points to consider for prioritizing clinical genetic testing services: a European consensus process oriented at accountability for reasonableness.},
  url          = {http://dx.doi.org/10.1038/ejhg.2014.190},
  volume       = {23},
  year         = {2015},
}