Recent achievements in the identification of numerous genetic risk factors for common solid tumors have opened up opportunities for multigene testing that are currently being introduced in many EU countries. However, translation of genetic information into individual or stratified risk prediction and the offer of clinical prevention programmes is a matter of debate that needs to take into account additional aspects, e.g. evidence for the effectiveness of preventive measures with respect to mortality reduction and quality of life, influence of genotype-/phenotype-correlations, appropriate risk communication and the consideration of socio-legal, ethical and psychological issues.
A multidisciplinary team of experts from different European countries have therefore developed a conceptual framework and international standards on how to meet the manifold challenges in the area of the early detection and prevention of hereditary breast cancer.
The recommendations serve as a common starting point to discuss in different health care systems throughout Europe with regard to dealing with genetic testing in the context of clinical care.
This activity has emerged out of the German National Cancer Plan where it was identified as an important action item in the future development of prevention programs.
This project is funded by the Federal Ministry of Health and is embedded in the EU CanCon initiative, work package 9 | screening.
Prof. Dr. Rita Schmutzler
Zentrum Familiärer Brust- und Eierstockkrebs
Universitätsklinikum Köln
Prof. Dr. Christiane Woopen
Direktorin ceres, Universität zu Köln/ Forschungsstelle Ethik, Uniklinik Köln
PD Dr. Kerstin Rhiem
Zentrum Familiärer Brust- und Eierstockkrebs
Universitätsklinikum Köln
RA Dr. Björn Schmitz-Luhn
Geschäftsführer ceres, Universität zu Köln
Ahti Anttila, PhD
Research Director of the Mass Screening Registry, Helsinki, Finland
Dr. Judith Balmaña
Vall d'Hebron Instituto de Oncologia (VHIO), Barcelona, Spain
Prof. Dr. Stefania Boccia
Sezione di Igiene, Instituto di Sanità Pubblica
Università Cattolica del Sacro Cuore, Rom, Italia
Prof. Dr. Bettina Borisch
Institute of Global Health
University of Geneva, Switzerland
Dr. Hilary Burton
PHG Funcation, Cambridge, United Kingdom
Cristina Cruz, MD, PhD
Vall d'Hebron University Hospital, Barcelona, Spain
Prof. Dr. Peter Dabrock
Friedrich-Alexander-Universität, Erlangen, Germany
Prof. dr. Peter Devilee
Leids Universitär Medisch Zentrum, Universiteit Leiden, The Netherlands
Prof. Diana Eccles, Mb CHB, MD, FRCP
Clinical Trials Unit, University of Southampton, United Kingdom
Prof. Dr. Günter Emons
Uniklinik Göttingen, Georg-August-Universität Göttingen, Germany
Prof. Dr. Wolfgang Gaissmaier
Max-Planck-Institut für Bildungsforschung, Universität Konstanz, Germany
Prof. Dr. Jacek Gronwald
International Hereditary Cancer Center
Pomorski Uniwersytet Medyczny Szczecin, Poland
Prof. Dr. Per Hall
Karolinska Institutet, Stockholm, Sweden
Dr. rer. nat. Stefanie Houwaart
BRCA-Netzwerk, Bonn, Germany
Prof. Dr. Stefan Huster
Lehrstuhl für Öffentliches Recht, Sozial- und Gesundheitsrecht und Rechtsphilosophie, Ruhr-Universität Bochum, Germany
Prof. Dr. Alexander Katalinic
Institut für Krebsepidemiologie, Universität Lübeck, Germany
Prof. dr. S.C. Sabine Linn
Antoni van Leeuwenkhoek - Nederlands Kanker Instituut, Amsterdam, The Netherlands
Prof. Dr. Gert Matthijs
Department of Human Genetics, University of Leuven, Belgium
Dr. Marc Nocon
Gemeinsamer Bundesausschuss, Berlin, Germany
PD Dr. med. Matthias Perleth
Gemeinsamer Bundesausschuss, Berlin, Germany
Prof. Dr. Paul Pharoah
Department of Oncology, University of Cambridge, United Kingdom
Prof. Dr. Dr. Tade Spranger
Center für Life Science & Law, Universität Bonn, Germany
Prof. Dr. Dominique Stoppa-Lyonnet
Institut Curie, Paris, France
Prof. Dr. Johannes Jozef Marten van Delden
Um Utrecht - Julius Center for Health Sciences and Primary Care, Universiteit Utrecht, The Netherlands
Dr. Marc van den Bulcke
Belgium Cancer Center (BCC), Brussels, Belgium
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