Advancing Science and Controlling the Misuse of Genetic Information in Employment and Insurance - Towards an Effective European Union Regulatory Framework

Abstract

The science of genetic testing and related technology is rapidly advancing. Among other things, genetic testing technology may offer the prospect of being able to detect the onset of future disabilities. It also offers the possibility of personalised medicine, which potentially promises to usher in a health care revolution, with significant public health benefits. It has the potential to transform health care through earlier diagnosis, more effective prevention and treatment of disease. Genetic technology is becoming more advanced and sophisticated and is being used increasingly for both medical and non- medical purposes.

If sufficient protections are not in place to prohibit the misuse or discriminatory use of genetic information by third parties (for example, employers and insurance companies) then such a legislative and policy vacuum could further setback the inclusion of persons with putative disabilities (and older persons) in the community. In addition, such a legislative and policy vacuum may also negatively impact upon public confidence in genetic science and technology, which may hamper public health and economic growth. To date, there is no European Union level regulation protecting the privacy of genetic information or protecting against the discriminatory use of such information.

Against the backdrop of rapidly advancing genetic technologies and the ethical and legal concerns that arise, this thesis examines the need for an EU level regulatory framework. The main focus of this examination is on the need to control the misuse of genetic information in the areas of employment and insurance, with the objective of advancing genetic science and acknowledging the competing interests at stake. This thesis will also consider the appropriate shape and content of a potential EU level regulatory response.