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

Franziska Severin; Pascal Borry; Martina C Cornel; Norman Daniels; Florence Fellmann; Shirley Victoria Hodgson; Heidi C Howard; Jürgen John; Helena Kääriäinen; Hülya Kayserili; Alastair Kent; Florian Koerber; Ulf Kristoffersson; Mark Kroese; Celine Lewis; Georg Marckmann; Peter Meyer; Arne Pfeufer; Jörg Schmidtke; Heather Skirton; Lisbeth Tranebjærg; Wolf H Rogowski

doi:10.1038/ejhg.2014.190

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

Franziska Severin, Pascal Borry, Martina C Cornel, Norman Daniels, Florence Fellmann, Shirley Victoria Hodgson, Heidi C Howard, Jürgen John, Helena Kääriäinen, Hülya Kayserili, Alastair Kent, Florian Koerber, Ulf Kristoffersson, Mark Kroese, Celine Lewis, Georg Marckmann, Peter Meyer, Arne Pfeufer, Jörg Schmidtke, Heather SkirtonLisbeth Tranebjærg, Wolf H Rogowski

19 Citations (Scopus)

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.

Original language	English
Journal	European Journal of Human Genetics
Volume	23
Pages (from-to)	1-7
Number of pages	7
ISSN	1018-4813
DOIs	https://doi.org/10.1038/ejhg.2014.190
Publication status	Published - 15 Jun 2015

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Severin, F., Borry, P., Cornel, M. C., Daniels, N., Fellmann, F., Victoria Hodgson, S., Howard, H. C., John, J., Kääriäinen, H., Kayserili, H., Kent, A., Koerber, F., Kristoffersson, U., Kroese, M., Lewis, C., Marckmann, G., Meyer, P., Pfeufer, A., Schmidtke, J., ... Rogowski, W. H. (2015). Points to consider for prioritizing clinical genetic testing services: a European consensus process oriented at accountability for reasonableness. European Journal of Human Genetics, 23, 1-7. https://doi.org/10.1038/ejhg.2014.190

Severin, F, Borry, P, Cornel, MC, Daniels, N, Fellmann, F, Victoria Hodgson, S, Howard, HC, John, J, Kääriäinen, H, Kayserili, H, Kent, A, Koerber, F, Kristoffersson, U, Kroese, M, Lewis, C, Marckmann, G, Meyer, P, Pfeufer, A, Schmidtke, J, Skirton, H, Tranebjærg, L & Rogowski, WH 2015, 'Points to consider for prioritizing clinical genetic testing services: a European consensus process oriented at accountability for reasonableness', European Journal of Human Genetics, vol. 23, pp. 1-7. https://doi.org/10.1038/ejhg.2014.190

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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.",

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AU - John, Jürgen

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AU - Kent, Alastair

AU - Koerber, Florian

AU - Kristoffersson, Ulf

AU - Kroese, Mark

AU - Lewis, Celine

AU - Marckmann, Georg

AU - Meyer, Peter

AU - Pfeufer, Arne

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AU - Tranebjærg, Lisbeth

AU - Rogowski, Wolf H

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N2 - 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.

AB - 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.

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

Abstract

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