From | 2011-03-09 |
To | 2011-03-11 |
Course | Human genetics is a rapidly evolving field in medicine. While the field holds great promise, it also creates special legal and ethical issues. This course will explore the legal and bioethical implications of genetic practice and research. Topics of discussion will include the application of ethical concepts in genetics (‘Genethics’); the nature of informed consent concerning genetic testing and genetic research, confidentiality and the duty to warn about genetic-related conditions; liability and risk management to avoid malpractice; individual and group privacy interests concerning identifiable genetic data; ethical analysis of public health initiatives (genetic screening, national repositories); insurance and employment discrimination based on genetic predispositions; sex selection; genetic and intellectual property issues, and a survey of cutting-edge genomic research. |
Venue | EuroMediterranean University Center of Bologna |
Directors | G. Siegal (Virginia, USA) |
Speakers | R. Chadwick (Cardiff, UK) E. Carbonara (Bologna, Italy) K. Dierickx (Leuven, Belgium) S. Gevers (Amsterdam, the Netherlands) C. Graziano (Bologna, Italy) M.C. Ploem (Amsterdam, the Netherlands) M. Mori ( Torino, Italy) E. Rynning (Upssala, Sweden) G. Siegal (Virginia, USA) N. Siegal (Jerusalem, Istrael) D. Turchetti ( Bologna, Italy) J. Zlotogora (Jerusalem, Istrael) H. Zwart (Nijmegen, the Netherlands) |
Programme | Wednesday, March 9, 2011 10.00 Course Registration 10:30– 10:45 Organizing Committee General introduction to the course 10:45 – 11:30 C. Graziano Modern Genetics - Present and Future Challenges 11:30 – 12:10 K.Dierickx Survey of Concepts in Modern Bioethics 12:10 – 12:50 R.Chadwick `Gene-ethics` – Applying Bioethical Concepts to Genetics and Genomics 12.50- 13.10 Questions and Answers session 13.30 Lunch Afternoon session – Patients, families and their rights and duties 14:15 – 15:00 E. Rynning Patients` Rights- Consent, Confidentiality 15:00 – 15:50 E. Rynning Genetic Information and the Right to Know/Not to Know; GeneticInformation and Family`s Rights 15:50 Coffee break 16.00 – 17:00 R. Chadwick Genetic Information and the Insurance/Employment arenas 17:00 – 17:20 Discussion
Thursday, March 10, 2011 Morning session – Public Health and screening policies 8:40 – 09:20 M.C. Ploem Biobanks – comparative ethico-legal analysis 09:20 – 10:00 J. Zlotogora Legal and Ethical Challenges of Genetic Testing and Screening 10:00 – 10:40 N.Siegal Assuring Access to Genetic Services – policy implications 10:40 Coffee break 11:00 – 11:45 J. Zlotogora, G. Siegal Legal and Ethical Challenges of Genetic Testing and Screening (B) – Carriers, pre marital, chronic diseases 11:45 – 12:30 M. Mori Why Genetic Testing is crucial for Public Health 12:30 – 13:20 K. Dierickx Managing Genetic Samples and Information – access, security and privacy 13.20 Lunch Afternoon session—Genetic Research 14:10 – 14:45 S. Gevers Human Subject Research 14:45 – 15:30 S.Gevers Special Issues in Genetics Research 15:30 Coffee break 16:00 – 17:10 H. Zwart Personalized Medicine, Direct to Consumer Marketing (including the business model of companies like 23andMe) 17:10 – 17:30 Discussion Friday, March 11, 2011 Morning session – Patents; Liability
09:00 – 09:45 Patents in Genetics and Genomics (including recent precedents over BRCA) 09:45 – 10:30 G. Siegal Malpractice/negligence – Introduction 10.30 Coffee Break 11:00 – 11:45 S. Gevers Genetics and Malpractice/Negligence – Standard of care, wrongful life cases, the limits of informed consent in modern genetics 11.45 – 12:15 Discussion 12:45 – 13:30 G. Siegal Concluding session 13.30 Lunch and departure |