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

Severin, F. (author)
Borry, P. (author)
Cornel, M. C. (author)
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Daniels, N. (author)
Fellmann, F. (author)
Victoria Hodgson, S. (author)
Howard, H. C. (author)
Uppsala universitet,Centrum för forsknings- och bioetik
John, J. (author)
Kaariainen, H. (author)
Kayserili, H. (author)
Kent, A. (author)
Koerber, F. (author)
Kristoffersson, Ulf (author)
Lund University,Lunds universitet,Avdelningen för klinisk genetik,Institutionen för laboratoriemedicin,Medicinska fakulteten,Division of Clinical Genetics,Department of Laboratory Medicine,Faculty of Medicine
Kroese, M. (author)
Lewis, C. (author)
Marckmann, G. (author)
Meyer, P. (author)
Pfeufer, A. (author)
Schmidtke, J. (author)
Skirton, H. (author)
Tranebjaerg, L. (author)
Rogowski, W. H. (author)
EuroGentest, committee (author)
Eshg Pppc Priority, Consortium (author)
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 (creator_code:org_t)
Springer Science and Business Media LLC, 2015
2015
English.
In: Eur J Hum Genet. - : Springer Science and Business Media LLC. ; 23:6, s. 729-735
  • Journal article (peer-reviewed)
Abstract Subject headings
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  • 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.

Subject headings

MEDICIN OCH HÄLSOVETENSKAP  -- Medicinska och farmaceutiska grundvetenskaper -- Medicinsk genetik (hsv//swe)
MEDICAL AND HEALTH SCIENCES  -- Basic Medicine -- Medical Genetics (hsv//eng)
MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi (hsv//swe)
MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Health Care Service and Management, Health Policy and Services and Health Economy (hsv//eng)

Keyword

Clinical Laboratory Services/ethics/*legislation & jurisprudence/standards
Consensus
Europe
Genetic Testing/ethics/*legislation & jurisprudence/standards
Social Responsibility
Bioetik
Bioethics

Publication and Content Type

ref (subject category)
art (subject category)

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