Privacy, confidentiality and genetic databases: A modified rights approach

The Human Genome Project has the potential to bring about enormous benefits to medicine. Large scale databases of genetic information and material serve an important function in advancing the knowledge brought about by the Human Genome Project. Such databases raise concerns for group and individual privacy. This thesis advocates that a modified rights approach to privacy ought to underlie the legal regulation of genetic databases. A purely individualistic rights approach towards the protection of privacy is not appropriate for the regulation of genetic information. The modified rights approach takes account of the familial and social nature of genetic information whilst recognizing the inherent importance of privacy. The extent to which the current law, including the Human Rights Act 1998 achieves this approach is considered. Account is taken of the Select Committee of the House of Lords Report, "Human Genetic Databases, Challenges and Opportunities".