Who owns genetic databases?

Keynote speech of Maurizio Borghi at the Escuela Libre de Derecho of Mexico City, 29 November 2016, in the framework of the international conference “Ciencia y Derecho en México” (download the programme here.)

Genetic databases are collections of genetic sequence information and other personal information about individuals’ medical history, which represent increasingly essential tools for biomedical research. Whereas international conventions such as the UNESCO International Declaration on Human Genetic Data of 2003 impose limitations on commercial exploitation of these resources, as well as strict rules on benefit sharing, the practice of the last years has shown an extensive use of intellectual property rights to restrict access to “precompetitive data” and to foster market power. The lecture discusses recent developments in the IP policies for public-sector genetic databases, such as Genomics England, and makes the case that “open access” policies should be imposed on privately-owned collections of genetic material and information.

With this participation, CIPPM inaugurates a collaboration with Rights and Science, the Jean Monnet Centre of Excellence of the University of Perugia, Italy.