Next Generation Medicine? Ethical, Legal and technological questions of genomic high throughput sequencing in the clinic Date November 14-15 2016 Venue University Medical Center Goettingen, Lecture Hall MED 25 Von-Siebold-Straße 3, 37075 Goettingen Organized by the GenoPerspektiv Consortium Ulrich Sax, PhD, Nadine Umbach, PhD, Department of Medical Informatics, University Medical Center Goettingen Due to increasingly effective technological platforms, sequencing of the human genome is now possible within hours and for less than 1000 Euro. This development has sparked growing interest among clinicians and molecular biologists. Genomic high throughput technologies are frequently hailed as a revolutionary tool that will radically change clinical practice and establish “predictive”, “individualized” or “precision” medicine. The aim is to target rare, clinically unrecognizable diseases or to subtype clinically indistinguishable disorders with a suspected genetic background, e.g., in the oncological context. More and more doctors, patients, and stakeholders are becoming aware of the possibilities of biomarker-based high-throughput analyses. At the same time, the clinical implementation of the rapid technological advances in the field of genomic high throughput sequencing is accompanied by practical difficulties and uncertainties. The interpretation and reporting of genomic findings in clinical practice, e.g., in molecular tumor boards, becomes more complicated. The increasing volume of huge and highly complex data sets also poses problems regarding sustainable infrastructures for management, integration and exploration of genomic sequencing data with other clinical data. And finally, the large pool of sensitive and ambiguous data raises ethical, legal, and social questions that are still in need of clarification, especially regarding informed consent, disclosure policies, and data protection. The workshop brings together experts from the fields of medicine, ethics, social sciences, law, and biomedical informatics. The aim is an interdisciplinary discussion of the challenges posed by clinical applications of genomic high throughput sequencing. The keynote lecture will be given by Christian Lenk (Ulm), patient representatives will discuss about their role and their position in next generation medicine. We are looking forward to vivid discussions with you! Further information on www.genoperspektiv.de or contact [email protected] Next Generation Medicine? Ethical, Legal and Technological Questions of Genomic High- Throughput Sequencing in the Clinic GenoPerspektiv Symposium November 14 – 15, 2016 Hörsaal MED25, von-Siebold-Str. 3, 37075 Göttingen Registration: [email protected] Day 1 Time Speaker 12:00 Title Registration 12:30 Ulrich Sax, Göttingen Welcome 13:00 Christoph Schickhardt, Heidelberg Normative Challenges of Genomic HighThroughput in the Clinic 13:45 Benedikt Brors, Heidelberg Bioinformatics Approaches for the Molecular Tumor Board 14:30 Coffee Break & Guided Poster Session 15:15 Martin Langanke, Greifswald The Role of Genetics in Systems Medicine 15:45 Matthieu-P. Schapranow, Potsdam Analyze Genomes: A Federated In-Memory Computing Platform Enabling High-Throughput Genome Data Analysis 16:15 Coffee Break & Guided Poster Session 17:00 Christian Lenk, Ulm 18:00 Reception Data, Body Material and the Person – Searching for common ground in the international regulation of genomic research Day 2 Time Speaker Title 09:00 Thomas Wienker, Berlin Genomic High-Throughput in the Clinic: Challenges and Perspectives 09:30 Ulrich M. Gassner, Augsburg Die datenschutzrechtliche Einwilligung in genomische Hochdurchsatztechnologien 10:00 Coffee Break 10:20 Nadine Umbach / Ulrich Sax, Göttingen Infrastrukturen für die Nutzung von Daten aus genomischen Hochdurchsatztechnologien 10:40 Julia Perera Bel / Tim Beissbarth, Göttingen How to Report Genomic High-Throughput Data in Molecular Tumor Boards 11:00 Alexander Urban / Mark Schweda, Göttingen Zum Nutzen genomischer Hochdurchsatztechnologien in der Klinik: Perspektiven von Experten und Betroffenen 11:20 Laura Flatau / Thomas G. Schulze, München & Göttingen Neue Möglichkeiten in der Medizin – Entscheidungen treffen! Eine Umfrage zu Einstellungen, Erwartungen und Befürchtungen der Bevölkerung gegenüber genomischen Hochdurchsatzdaten 11:40 Gunnar Duttge, Göttingen Die ärztliche Schweigepflicht in Zeiten von Big Data 12:00 Lunch Break 13:00 Patrick Schloss, Mannheim Ohne Darmspiegelung wäre ich nicht mehr am Leben. Sowie: Darmkrebs – was kommt danach? Folgen für Betroffene und Angehörige 13:30 Martin Kolbe, DGBS Genomsequenzierung – wie denken Patienten und Angehörige darüber? 14:00 Ulrich Sax Göttingen Concluding remarks
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