A critical and comparative analysis of legal provisions regulating privacy aspects of genetic testing within the U.K.

Abstract

This research aims to determine whether or not the legal provisions, which regulate the privacy and confidentiality aspects of genetic testing adequately realise their stated or implied goals. This will be achieved by developing a detailed understanding of the manner in which current law regulates privacy and confidentiality issues arising from genetic testing in the UK. It will consider the legal position in anotherjurisdiction, namely Australia, in an attempt to fully evaluate the current legal stance by placing it within a broader context of alternative social and legal responses. The work will seek to illustrate that the UK legal position is not the only possible response to the phenomenon of genetic privacy and, to explore the proposition that current legislation fails to take due account of significant ethical implications in genetic testing within the UK.
This research intends to go beyond evaluating the law and existing literature and to make a contribution to the debate by identifring possible areas, which require legal reform. To contribute to the academic debate on this topic by critiquing the literature from the perspective of emerging human rights provisions, those relating to the individual right to confidentiality and rights to privacy, now guaranteed under the Human Rights Act 1998. As the Human Rights Act 1998 came into force fairly recently (October 2000), this research aims to contribute to the academic debate on this topic by addressing the specific issue of whether current legal regulation of genetic privacy and confidentiality meets the obligation to protect the rights protected under the European Convention on Human Rights, in particular the Article 8 right of privacy.