Evidence map›Paper›PMID 25248395›Full record

ArticleEuropean journal of human genetics : EJHG2015

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 and 13 more

Abstract readConsensus Statement
In one paragraph

Article in European journal of human genetics : EJHG, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers.

0numbers the graph read from it
0cells of the map it votes in
18citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

18 citing papers in PubMed.

  1. Review
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  5. Physician and informal care use explained by the Pediatric Quality of Life Inventory (PedsQL) in children with suspected genetic disorders.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024
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  7. Article
  8. Article
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  15. Towards establishing consistency in triage in a tertiary specialty.European journal of human genetics : EJHG · 2019
    Article
  16. Article
  17. Article
  18. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

23 authors.

Franziska SeverinInstitute for Health Economics and Health Care Management, Helmholtz Zentrum München, German Research Center for Environmental Health (GmbH), Neuherberg, Germany.
Pascal BorryDepartment of Public Health and Primary Care, KU Leuven, Leuven, Belgium.
Martina C CornelDepartment of Clinical Genetics, Section Community Genetics, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Amsterdam, The Netherlands.
Norman DanielsDepartment of Global Health and Population, Harvard School of Public Health, Boston, MA, USA.
Florence FellmannService de Génétique Médicale, CHUV, Lausanne, Switzerland.
Shirley Victoria HodgsonDepartment of Medical Genetics, St George's University of London, London, UK.
Heidi C Howard1] Center for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden [2] Université de Toulouse 3 Paul Sabatier, UMR 1027, Faculté de médecine Purpan, Toulouse, France.
Jürgen JohnInstitute for Health Economics and Health Care Management, Helmholtz Zentrum München, German Research Center for Environmental Health (GmbH), Neuherberg, Germany.
Helena KääriäinenNational Institute for Health and Welfare, Helsinki, Finland.
Hülya KayseriliDepartment of Medical Genetics, Istanbul Medical Faculty, Istanbul University, Istanbul, Turkey.
Alastair KentGenetic Alliance UK, Unit 4D, Leroy House, London, UK.
Florian KoerberInstitute for Health Economics and Health Care Management, Helmholtz Zentrum München, German Research Center for Environmental Health (GmbH), Neuherberg, Germany.
Ulf KristofferssonDepartment of Clinical Genetics, Laboratory Medicine, Region Skane and Lund University, Lund, Sweden.
Mark KroesePHG Foundation, 2 Worts Causeway, Cambridge, UK.
Celine LewisClinical and Molecular Genetics, UCL Institute of Child Health and Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
Georg MarckmannInstitute for Ethics, History and Theory of Medicine, Ludwig Maximilians University Munich, Munich, Germany.
Peter Meyer1] Human Genetics Foundation, Munich, Germany [2] Institute for Medical Genetics, University Medicine, Rostock, Germany.
Arne PfeuferInstitute for Bioinformatics and Systems Biology, Helmholtz Zentrum München, German Research Center for Environmental Health (GmbH), Neuherberg, Germany.
Jörg SchmidtkeDepartment of Human Genetics, Hannover Medical School, Hannover, Germany.
Heather SkirtonFaculty of Health and Human Science, School of Nursing and Midwifery, Plymouth University, Drake Circus Plymouth, UK.
Lisbeth Tranebjærg1] Department of Audiology, Bispebjerg Hospital/Rigshospitalet, Copenhagen, Denmark [2] Institute of Cellular and Molecular Medicine, University of Copenhagen, Copenhagen, Denmark.
Wolf H Rogowski1] Institute for Health Economics and Health Care Management, Helmholtz Zentrum München, German Research Center for Environmental Health (GmbH), Neuherberg, Germany [2] Institute and Outpatient Clinic for Occupational, Social and Environmental Medicine, Clinical Center, Ludwig Maximilians University, Munich, Germany.
EuroGentest and ESHG/PPPC Priority Consortium

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

Clinical Laboratory ServicesEuropeGenetic TestingSocial Responsibility

Identifiers

PMID25248395
PMCPMC4795066

What OpenQuestion holds

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LicenceCC BY-NC-SA
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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.