From | 2008-02-14 |
To | 2008-02-17 |
Course | The confluence of molecular biology, biomedical engineering, and clinical medicine has led to a rapidly expanding range of new opportunities for patient care in many areas of medicine, among which, perhaps most visibly, is medical genetics. However such radical advances not only give rise to changes in the practice of medicine, but require a fresh look at the bioethical implications of the new practices, and the adequacy of existing legal and policy institutions. This course will explore those issues from European and global perspectives. Topics of discussion will include the application of ethical concepts in genetics; the nature of informed consent concerning clinical trials, genetic testing, confidentiality and the duty to warn about genetic-related conditions; liability and risk/benefit in medical technology development; individual (or group) privacy interests versus public interest with respect to identifiable genetic data and/or data bases such as device registries; ethical analysis of public health initiatives (genetic screening, national repositories); consistency in treatment of genetic and other medical data with respect to insurance and employment discrimination; sex selection; malpractice/clinical negligence in genetics.
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Venue | EuroMediterranean University Centre of Ronzano and Johns Hopkins University SAIS Bologna Center, Bologna (Italy) |
Directors | K.H. Keller (Bologna, Italy), G. Romeo (Bologna, Italy), G. Siegal (Kiryat Ono, Israel) |
Speakers | G. Biasco (Bologna, Italy), J. F. Childress (Charlottesville, USA), S. Desiderio (Baltimore, USA), C. Faralli (Bologna, Italy), L. Garofano (Parma, Italy), M. Genuardi (Florence, Italy), J.K.M. Gevers (Amsterdam, The Netherlands), R. Gillon (London, UK), S. Rodot‡ (Rome, Italy), M. Rothstein (Louisville, USA), A. Santosuosso (Pavia, Italy), L. Skene (Melbourne, Australia), D. Turchetti (Bologna, Italy), J. Zlotogora (Ramat Gan, Israel) |
Programme | DAY 1 - Introduction: DEVELOPMENT & INNOVATION in GENETIC MEDICINE Afternoon Session 14:30 – 14:45 General introduction to the course – G. Romeo, G. Siegal, K. Keller, C. Faralli 14:45 – 15:30 Introduction to Genetic Medicine – G. Romeo 15:30 – 16:15 The medical genetics lab: research and diagnosis – M. Genuardi 16:15 – 16:45 Coffee break 16:45 – 17:30 The medical genetics clinic: genetic counselling – D. Turchetti 17:30 – 18:00 Ethical problems in genetic testing - A. Santosuosso 18:00 – 18:30 t.b.d. - S. Rodotà
DAY 2 - ETHICAL ISSUES IN GENETICS, GENOMICS & MEDICAL TECHNOLOGY Morning Session
9:00 – 10:00 Basic concepts in Bioethics and some European perspectives – J.Childress/J.K.M. Gevers (30 min each) 10:00 – 11:00 Genethics – Applying bioethical concepts to genetics and genomics J.Childress/ L.Skene (30 min each) 11:00 – 11:30 Coffee Break 11:30 – 12:00 Bioethics and the special case of medical devices – K.Keller 12:00 - 12.30 Discussion – Transcultural/transnational diversity in bioethics – Can harmonization be achieved? Should it? R.Gillon 12:30 – 13:00 General questions & answers Lunch break Afternoon Session 14:00 – 14:45 Patients` Rights – Consent, confidentiality – M.Rothstein/J.K.M.Gevers 14:45 – 15:30 Privacy and genetic testing – S.Rodotà 15:30 – 16:00 Coffee break 16:00 – 16:30 Genetic information and the right to know/not to know, family’s rights L.Skene 16:30 – 17:00 End of life decisions and family rights – G.Biasco 17:00 - 18:00 Workshop – Discussion and case analysis – Genetic tests and adoption - G.Siegal /J.Childress /L.Skene/R. Gillon (3-4 small groups discussion) 18:00 -18:30 General questions & answers
DAY 3 - PUBLIC POLICY CHALLENGES Morning Session 9:00 - 09:45 Managing genetic samples and information – access, security and privacy M.Rothstein 9:45 – 10:15 Information technology and the medical record – standards and sharing. – A.Sorensen 10:15 – 11:00 Medical information and the insurance/employment arenas L.Skene /t.b.d. 11:00 – 11:30 Coffee break 11:30 – 12:00 Genetic research – the ethical and legal framework – M.Rothstein 12:00 – 12:30 The experimental to clinical axis – a false dichotomy – K.Keller 12:30 – 13:00 General questions & answers 13:00 – 14:00 Lunch break Afternoon session 14:00 – 14:40 Ethics and law in public health and genetics – Introduction – J.Childress 14:40 – 15:30 Legal and ethical challenges of genetic testing and screening – Pregnancy, newborns, carriers – J.Zlotogora, G.Siegal (30 min each)
15:30 – 16:00 Coffee break 16:00 – 17:00 Genetic testing and screening – Policy implications B.Goldman/ A. Santosuosso 17:00 – 17:30 Biobanks – comparative ethico-legal analysis – t.b.d. 17:30 – 18:30 General questions & answers
DAY 4 – RULES FOR SCIENTIFIC RESEARCH AND INNOVATION Morning Session 9:00 – 09:30 Institutional Review Board and Informed Consent Issues - S.Desiderio 9:30-10:00 Post market medical device surveillance – Rights, responsibilities and liabilities - K.Keller 10:00 – 10:30 Transnational rules for scientific applications – A.Santosuosso 10:30 – 11:00 Coffee break 11:00 – 11:30 Genetics and intellectual properties – G.Romeo 11:30 – 12:30 Non-medical interventions – Applying bioethical principles to sex and other selection, enhancements, etc. – B. Goldman / J. Childress / M. Rothstein / G.Siegal / L.Skene 12:30 – 13:00 Assembly meeting - General questions & answers 13:00 –14:00 Lunch break Afternoon session 14:00 – 14:30 Malpractice/negligence – Introduction - G. Siegal 14.30 – 15:00 Genetics and malpractice/negligence – Standard of care, wrongful life cases, the limits of informed consent in modern genetics - J.Gevers 15:00 – 15:30 Concluding session – G.Romeo, G.Siegal, K.Keller, C.Faralli |