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From2009-03-06
To2009-03-08
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.

VenueThe 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

European School of Genetic Medicine