Individual Rights and Property Rights in Human Genetic Databases

Abstract

The paper discusses the conflict between individual rights in genetic information and intellectual property rights arising from human genetic databases. It shows how Anglo-American jurisprudence has addressed the issue of individuals’ control over the use genetic information, in particular when this use exceeds the scope of the initial consent given by the individual with respect to their own genetic information and other medical data. The main conflicts arise when the information has been initially released for therapeutic or research aims and then is used for commercial purposes or to develop patented inventions. Despite severe criticism by legal scholars, Anglo-American jurisprudence tends to allow secondary uses of biological material and medical information even when they are incompatible with the initial consent, on the sole condition that no harm is done to the individual’s right to privacy. The chapter examines the legal mechanisms that have been adopted by government authorities to regulate the use of human genetic databases and to ensure that research on those databases is consistent with individuals’ expectation and public interest.

Keywords: Human Genome, Biobanks, Patents, Database Right, Genomic England

JEL Classification: K11, K32