European school of Genetic Medicine, Bologna (Italy)
14th-17th February, 2008
Thursday, February 14th, h.14:00 - Arrival at the Ronzano Venue - INTRODUCTION: Development & Innovation in Genetic Medicine
Afternoon Session 14:30 Romeo, Siegal, Keller, Faralli General introduction to the course 14.45 Romeo Introduction to Genetic Medicine 15.30 Genuardi The medical genetics lab: research and diagnosis 16:45 Turchetti The medical genetics clinic: genetic counselling 17:30 Santosuosso Ethical problems in genetic testing Friday, February 15th (JHU SAIS Bologna Center) - Ethical Issues in Genetics, Genomics & Medical Technology Morning Session 09.00 Childress / Gevers Basic concepts in Bioethics and some European perspectives (30 min each) 10.00 Childress / Skene Genethics - Applying bioethical concepts to genetics and genomics (30 min each) 11:30 Keller Bioethics and the special case of medical devices 12:00 Gillon Discussion - Transcultural / transnational diversity in bioethics - Can harmonization be achieved? Should it? 12:30 General Questions & Answers Afternoon Session 14:00 Rothstein Genetic exceptionalism 14:25 Gevers On Patients' Rights - Consent 14:55 Rodotà Privacy and genetic testing 16:00 Skene Genetic information and the right to know/not to know, family's rights 16:30 Garofano Genetic database for security purpose - standards and regulations in Europe 17:00 Siegal / Childress / Skene / Gillon Workshop - Discussion and case analysis - Genetic tests and adoption (3-4 small group discussion) 18:00 General Questions & Answers Saturday, February 16th (JHU SAIS Bologna Center) - Public Policy Challenges Morning Session 09.00 Rothstein Managing genetic samples and information - access, security and privacy 09.45 t.b.d. Information technology and the medical record - standards and sharing 10.15 Skene Medical information and the insurance / employment arenas 11.30 Rothstein Genetic research - the ethical and legal framework 12.00 Keller The experimental to clinical axis - a false dichotomy 12:30 General Questions & Answers Afternoon Session 14:00 Childress Ethics and law in public health and genetics - Introduction 14:40 Zlotogora / Siegal Legal and ethical challenges of genetic testing and screening - Pregnancy, newborns, carriers (25 min each) 16:00 Santosuosso Genetic testing and screening - Policy implications 16:30 Biasco End of life ecisions and family rights 17:00 General Questions & Answers Sunday, February 17th (JHU SAIS Bologna Center) - Rules for Scientific Research and Innovation Morning Session 09.00 Desiderio Institutional Review Board and Informed Consent Issues 09.30 Keller Post market medical device surveillance - Rights, responsibilities and liabilities 10.00 Santosuosso Transnational rules for scientific applications 11.00 Romeo Genetics and intellectual properties 11:30 Childress / Rothstein / Siegal / Skene / Rodotà Non-medical interventions - Applying bioethical principles to sex and other selection, enhancements, etc. (3 small groups discussion, 2 moderators for each group) 12:30 Assembly meeting - General Questions & Answers Afternoon Session 14:00 Siegal Malpractice / negligence - Introduction 14:20 Gevers Genetics and malpractice / negligence - Standard of care, wrongful life cases, the limits of informed consent in modern genetics 15:00 Romeo / Siegal / Keller / Faralli Concluding session
15:30 DEPARTURE
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