Genetics Open Day 1999

Who owns the Human Genome ?

Intellectual property and the role of media in genetics

A meeting for media, scientists and the general public organized in collaboration with

Consiglio Nazionale Dell'Ordine dei Giornalisti
Istituto G. Gaslini, Consorzio Mario Negri Sud -- Center For Scientific Communication
HUGO, ESHG, FEBS, FOSTER, Swiss National Science Foundation
Monday, May 17 1999
La Nunziata Centre (former colonia Tagliaferro) - Sestri Levante (Genova)

A year after the approval of the European directive on biotechnology and the Unesco declaration on human rights and biomedicine, EGF and EMBO have called a Genetics Open Day to discuss the media coverage of social, ethical and legal issues raised by the patenting of human DNA sequences in public and private research and to promote the public understanding of genetics. The role of the media seems crucial in providing correct information for the general public on the issues raised by the growing interest of private companies in population studies and patenting of sequences of the Human Genome. The expansion of this newborn and very promising sector known as pharmacogenomics, aiming to develop drugs tailored to individual genetic profiles, brings on an enourmous potential for society and could lead to new and more efficient theurapeutic tools. At the same time, the nature of this research raises questions on the protection of genetic privacy and property of the Human Genome. A larger and informed debate, including the citizens as well as patient support-groups, specialists of different disciplines, from lawyers to journalists and scientists, seems a necessary step in the construction of a legal and ethical framework for this kind of research.

9:00 Property of Genetic Information Arising from Population Studies
Round table discussion on the geneticists' viewpoint - Moderator : Adriano Aguzzi (University of Zurich)

• Frank Gannon (Secretary General of EMBO),
• Kari Stefansson (deCODE CEO-Reykjavik),
• Andrea Ballabio (President ESHG-European Society of Human Genetics),
• Julio Celis (FEBS-Federation of European Biochemical Societies),
• Dick Cotton (HUGO-Human Genome Organization),
• Lefkos T. Middleton (Glaxo-Wellcome),
• Leonardo Vingiani (Assobiotec director).

14:00 Genetic Information : the Ethical and Legal Framework
Round table discussion - Moderator : Amedeo Santosuosso (Civil Court Judge, Milan)

• Bartha Maria Knoppers (President of HUGO Committee for Ethical Legal and Social Issues, Montreal),
• Stefano Nespor (Lawyer, editor in chief of La Rivista
• Giuridica dell'Ambiente, Milan),
• Pier Giuseppe Monateri (University of Turin)

16:00 Genetics and the Media
Round table discussion - Moderator : Cinzia Caporale (Bioethicist, La Sapienza University, Rome - journalist at Radio Radicale)

• Adriano Aguzzi (University of Zurich),
• Milly Moratti (Italian Green Party -- coordinator of the campaign against genetically modified organisms),
• Fabrizia Pratesi (Italian Green Party),
• Patrizio Mulas (Italian National Journalist Association),
• Pietro Greco (l'Unit�, deputy director of the Master in Science Communication - S.I.S.S.A, Trieste) ,
• Paolo Hutter (ERBA director),
• Margherita Fronte (Zadig Science Service and Tempo Medico),
• Luciano Lombardi (director ADN-Kronos Medicine & Health Press Agency, Rome),
• Armando Massarenti (Il Sole 24Ore, Milan),
• Giovanni de Gaetano (director Mario Negri Sud, Santa Maria Imbaro).
• Beatrice Pellegrini (L'Hebdo),
• Tobias Frey (Tages Anzeiger),
• and Mark Livingston (free lance), will report on last year referendum in Switzerland on recombinant DNA.

18:30: Conclusions

Participation is free of charge. Language : English and Italian with simultaneus translation. For inquiries :

EUROPEAN GENETICS FOUNDATION
[email protected]
http://www.eurogene.org
Piazza Campetto 2/8, 16123 Genova
Tel : 39-010-246-46-46
Fax : 39-010-246-60-55