Expert Group RiskAP

RiskAP  ̶  Risk-adjusted Prevention of Hereditary Breast Cancer

Development of a Position Paper on the Prevention of Hereditary Breast Cancer adjusted to Genetic Risk Factors

Background

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.

Objectives

Therefore a multidisciplinary team of experts from different European countries will develop 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 that are to be developed may 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 programmes. This project is funded by the Federal Ministry of Health and is embedded in the EU CanCon initiative, work package 9 | screening.


Project Leaders

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

Members

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