From | 2009-03-06 |
To | 2009-03-08 |
Course | Advances in a number of fundamental fields of science and technology, including genetics, molecular and cell biology, information technology and material science have created a number of opportunities for the improved clinical care of patients. However, the radical and rapid advances in such a broad range of fields raise a number of challenges for society as well as ethical and public policy issues. Overall the workshop will compare and contrast issues raised by contemporary medical practices and genetic counseling with issues raised by new technological developments and genetic testing. |
Venue | The Johns Hopkins University SAIS Bologna Center, via Belmeloro 11, Bologna (Italy) |
Directors | Kenneth H. Keller (Bologna, Italy), Giovanni Romeo (Bologna, Italy) |
Speakers | Jean Jacques Cassiman (Center for Human Genetics - University of Leuven, BE), Stephen Desiderio (The Johns Hopkins University School of Medicine, Baltimore, USA), Massimo Federico (University of Modena and Reggio Emilia - Modena, Italy), Luciano Garofano (RIS, Carabinieri Scientific Investigative Department - Parma, IT), Giuliana Gemelli (MISP Master on international Studies in Philanthropy and Social Entrepreneurship University of Bologna, IT), Jef K.M. Gevers (European Journal of Health Law and University of Amsterdam, NL), Jeffrey Kahn (University of Minnesota, Minneapolis, USA), Kenneth H. Keller (The Johns Hopkins University SAIS Bologna Center, IT), Roberto Lattanzi (Italian Privacy Authority ñ Rome, IT), Lucio Luzzatto (Istituto Toscano Tumori - Florence, IT), Anna Mastroianni (University of Washington School of Law, Seattle, USA), Gert Matthijs (Center for Human Genetics - University of Leuven, BE), Antonio Casado da Rocha (University of the Basque Country -UPV/EHU,San Sebastian, ES), Stefano Rodot‡†(University La Sapienza - Rome, IT), Giovanni Romeo (University of Bologna, IT), Amedeo Santosuosso (Court of Appeal of Milan, IT), Gil Siegal (ONO Academic College - Kiryat Ono, IL), Daniela Turchetti (University of Bologna, Italy), Aaron Sorensen (Collexis - Locarno, Switzerland), Simon Woods (PEALS Research Centre ñ Newcastle Upon Tyne, UK) |
Programme | Friday, 6th March Morning Session (9:00-13:00) - GENETICS AND SOCIETY General introduction to the course – K. Keller, G. Romeo Privacy issues in Genetics – S. Rodotà Managing Genetic Databases – R. Lattanzi Genetic database for security purpose–standards and regulations in Europe– L. Garofano The contribution of the Rockfeller Foundation to the construction of Global Health policies – G. Gemelli Questions & Answers Session
Afternoon Session (14:30-18:00) - GENETIC TESTING AND COUNSELLING The medical genetics lab and clinic: research and diagnosis – G. Romeo Introduction to Genetic Testing – J.J. Cassiman Quality management in genetic testing – G. Matthijs Quality management of genetic counseling – J.J Cassiman Questions & Answers Session
Saturday, 7th March Morning Session (9:00-13:00) – Use of Medical Information Managing genetic samples and information – access, security and privacy – A. Mastroianni Information technology and the medical record – standards and sharing – A. Sorensen Post market medical device surveillance – Rights, responsibilities and liabilities - K. Keller Questions & Answers Session Afternoon Session (14:30-18:45) – The translational process Transcending Utility: From Basic Research to Translational Medicine - S. Desiderio Genetics and malpractice/negligence – Standard of care, wrongful life cases, the limits of informed consent in modern genetics – J.K.M. Gevers From research to applications in patient care – J. Kahn Africa and Global Health - L. Luzzatto Transnational rules for scientific research – A. Santosuosso The Olive Tree project, a cooperation across Mediterranean countries for improving cancer registration – M. Federico Round Table: BRCA1-2 patents in Europe: update and implications (D. Turchetti, G. Matthijs, M. Federico, A. Santosuosso, L. Luzzatto) Questions and answers
Sunday 8th March - Bioethics Morning Session (9:00-13:00) Genetic research – the ethical and legal framework – G. Siegal Biobanks – comparative ethico-legal analysis – A.C. da Rocha Ethical issues and public understanding – S. Woods Population Genomics – Ethics, law and policy – G. Siegal Concluding session Departure after lunch |