Genetics Open Day( Genetics Open Day 1999 Who owns the...)

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 (Secret
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