ACGT - Advancing Clinico-Genomic Trials on Cancer (http://www.eu-acgt.org/)

Sub-project: Ethical and social aspects of GRID-supported clinico-genomic research

Kollek, Regine (kollek[at]uni-hamburg.de)

Petersen, Imme (Imme.Petersen[at]uni-hamburg.de)

Forschungsgruppe Medizin/Neurowissenschaften FSB BIOGUM,
European Consortium for Informatics and Mathematics (ERCIM), 
Foundation for Research and Technology Hellas (FORTH),
National Institute for Research in Computer Science and Control (INRIA),
Universiteit van Amsterdam (UvA),
Philips (Philips),
Centre Hospitalier Universitaire Bordet (IJB),
Institut Suisse de Bioinformatique (SIB),
Lunds University (LundU),
Computer Architecture Department at the University of Malaga (UMA),
Polytechnical University of Madrid (UPM),
Fraunhofer-Gesellschaft (FhG),
BIOVISTA (BIOVISTA),
Medical School of the University of Crete (UOC),
Institute of Legal Informatics of Universitaet Hannover (IRI),
Poznan Supercomputing and Networking Center (PSNC),
Custodix (Custodix),
HealthGrid (HealthGrid),
Institute of Communications and Computer Systems (ICCS),
Saarland University (UdS),
SIVECO (SIVECO),
Research Centre for Computer and Law, of the Facultes Universitaires Notre-Dame de la Paix (FUNDP),
Molecular Oncology Laboratories at the Weatherall Institute of Molecular Medicine (UOXF.BP),
Hokkaido University (UHoK),
European Institute of Oncology (IEO)

ACGT aims at the development of an integrated GRID-infrastructure on the European level which enables researchers and clinicians to share clinical, biomedical, and genomic data from autonomous databanks in different geographical sites.

Such a technological platform opens the possibility to bring together clinical, biomedical and genomic data concerning the progress of disease and reaction to therapy. Additionally, research results of different trials can be compared. This might support a better understanding of the causes and courses of cancer (e.g. breast cancer, nephroblastoma) and of the optimal adjuvant therapy for the individual patient.

The individual rights of patients who donate blood and tumour samples or the data generated from these samples for the ACGT-project must be protected. This includes that the donors are provided with adequate information to consent voluntarily and explicitly to data sampling and storage (informed consent) and that the access to stored data has to be controlled. Only authorized persons are supposed to get access (data protection). ACGT will, therefore, enable exchange and integration of clinico-genomic data by developing the technical and organisational infrastructure which is – at the same time – in compliance with ethical and legal requirements for the protection of patients’ personal rights.

In cooperation with the Institut für Rechtsinformatik, Leibniz Universität Hannover (Prof. Nikolaus Forgo), Centre de Recherches Informatique et Droit, Facultés Universitaires, Notre Dame de la Paix de Namur (Jean-Marc Van Gyseghem) und CUSTODIX, a private company for privacy protection solutions for data collection (Brecht Clearhout), the research group Medizin/BIOGUM works on the ethical, social, and legal questions regarding the development and establishment of the ACGT-infrastructure.

1. February 2006

31. July 2010

The project is funded by the 6th European Research Framework Programme.

Luttenberger, N; Kollek, R: Reischl, J: Stürzebecher, S. (2006): Design of Individual Donor Feedback Processes in Biobank Research. In: Proceedings of the Jahrestagung der Gesellschaft für Informatik. „Lecture Notes in Informatics (LNI)“, Springer-Verlag, pp 722-728.

Graf, N., Desmedt, C., Buffa, F., Kafetzopoulos, D., Forgó, N., Kollek, R., Hoppe, A., Stamatakos, G., Tsiknakis, M. (2008). Post-genomic clinical trials - the perspective of ACGT. ecancermedicalscience 2, http://www.ecancermedicalscience.com/view-article.asp?doi=10.3332/eCMS.2008.66

Arning, M., Krügel, T. & Petersen, I. (2008). Erbgut gut - alles gut? Technikfolgenabschätzung – Theorie und Praxis 2008, 122-126.

Petersen, I. (2008). Mehr Standard, weniger Vielfalt. Technikfolgenabschätzung – Theorie und Praxis 3/2008, 114-117.