title: Towards a European consensus for reporting incidental findings during clinical NGS testing.
abstract: In 2013, the American College of Medical Genetics (ACMG) examined the issue of incidental findings in whole exome and whole genome sequencing, and introduced recommendations to search for, evaluate and report medically actionable variants in a set of 56 genes. At a debate held during the 2014 European Society for Human Genetics Conference (ESHG) in Milan, Italy, the first author of that paper presented this view in a debate session that did not end with a conclusive vote from the mainly European audience for or against reporting back actionable incidental findings. In this meeting report, we elaborate on the discussions held during a special meeting hosted at the ESHG in 2013 from posing the question 'How to reach a (European) consensus on reporting incidental findings and unclassified variants in diagnostic next generation sequencing'. We ask whether an European consensus exists on the reporting of incidental findings in genome diagnostics, and present a series of key issues that require discussion at both a national and European level in order to develop recommendations for handling incidental findings and unclassified variants in line with the legal and cultural particularities of individual European member states.
authors.affiliation: Department of Human Genetics, Radboud UMC, Nijmegen, The Netherlands.|Donders Centre of Cognitive Science, Nijmegen, The Netherlands.
authors.forename: Jayne Y
authors.initials: JY
authors.lastname: Hehir-Kwa
authors.affiliation: Department of Molecular Genetics, IURC (Institut Universitaire de Recherche Clinique), Montpellier, France.
authors.forename: Mireille
authors.initials: M
authors.lastname: Claustres
authors.affiliation: CEQAS, Women's Centre, John Radcliffe Hospital, Oxford University Hospitals NHS Trust, Oxford, England.
authors.forename: Ros J
authors.initials: RJ
authors.lastname: Hastings
authors.affiliation: University of Groningen, University Medical Center Groningen, Department of Genetics, Groningen, The Netherlands.
authors.forename: Conny
authors.initials: C
authors.lastname: van Ravenswaaij-Arts
authors.affiliation: Centre for Biomedical Ethics and Law, University of Leuven, Leuven, Belgium.
authors.forename: Gabrielle
authors.initials: G
authors.lastname: Christenhusz
authors.affiliation: Institute of Medical Genetics, 'A. Gemelli' School of Medicine, Catholic University of the Sacred Heart, Rome, Italy.
authors.forename: Maurizio
authors.identifier: http://orcid.org/0000-0002-7410-8351
authors.initials: M
authors.lastname: Genuardi
authors.affiliation: Department of Medical Genetics, University of Pécs, Pécs, Hungary.
authors.forename: Béla
authors.initials: B
authors.lastname: Melegh
authors.affiliation: Institut national de la santé et de la recherche médicale and Université Toulouse III-Paul Sabatier joint Unit 1027, Faculty of Medicine, Toulouse, France.
authors.forename: Anne
authors.identifier: http://orcid.org/0000-0001-8793-3644
authors.initials: A
authors.lastname: Cambon-Thomsen
authors.affiliation: Translational Genetics Team, The Cyprus Institute of Neurology & Genetics, Cyprus School of Molecular Medicine, Nicosia, Cyprus.
authors.forename: Philippos
authors.initials: P
authors.lastname: Patsalis
authors.affiliation: Centre for Human Genetics, University Hospital Leuven, Department of Human Genetics, KU Leuven, Leuven, Belgium.
authors.forename: Joris
authors.initials: J
authors.lastname: Vermeesch
authors.affiliation: Clinical Genetics & EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Martina C
authors.initials: MC
authors.lastname: Cornel
authors.affiliation: Unique (Rare Chromosome Disorder Support Group), Oxted, England.
authors.forename: Beverly
authors.initials: B
authors.lastname: Searle
authors.affiliation: Institute for Molecular Medicine Finland (FIMM), University of Helsinki, Helsinki, Finland.
authors.forename: Aarno
authors.initials: A
authors.lastname: Palotie
authors.affiliation: SIBioC Clinical Molecular Diagnostic Training School, Istituto di Biochimica Clinica, Università Cattolica del S. Cuore, Rome, Italy.
authors.forename: Ettore
authors.initials: E
authors.lastname: Capoluongo
authors.affiliation: Department of Obstetrics and Gynecology, Clinical Institute of Medical Genetics, University Medical Centre Ljubljana, Ljubljana, Slovenia.
authors.forename: Borut
authors.initials: B
authors.lastname: Peterlin
authors.affiliation: Center for Genomic Regulation (CRG), Barcelona, Spain.|Pompeu Fabra University (UPF), Barcelona, Spain.|Dexeus Women's Health Quiron-Dexeus University Institute, Barcelona, Spain.
authors.forename: Xavier
authors.initials: X
authors.lastname: Estivill
authors.affiliation: Institut für Medizinische Genetik und Humangenetik, Charité - Universitätsmedizin Berlin, Berlin, Germany.|Berlin Brandenburg Center for Regenerative Therapies, Charité - Universitätsmedizin Berlin, Berlin, Germany.|Department of Mathematics and Computer Science, Institute for Bioinformatics, Freie Universität Berlin, Berlin, Germany.
authors.forename: Peter N
authors.identifier: http://orcid.org/0000-0002-0736-9199
authors.initials: PN
authors.lastname: Robinson
mesh_terms: D003245:Consensus Statements as Topic; D005062:European Union; D059014:High-Throughput Nucleotide Sequencing / Q000379:methods / Q000592:standards*; D033162:Incidental Findings; D017422:Sequence Analysis, DNA / Q000379:methods / Q000592:standards*