Genetic Information and the Challenge to Privacy

Abstract

Genetic screening and testing techniques provide a new and powerful diagnostic tool for the acquisition of predictive information. The potential value of such diagnostic techniques cannot be overstated. Genetic diagnostic tests pave the way for the development of gene therapy techniques which may provide remedies for diseases previously considered untreatable. There are clearly tremendous opportunities for improving the quality of life of those who suffer from genetic disorders as well as opportunities for biotechnology and pharmaceutical companies to swell their profits. A complex of pressures and tensions is currently developing around the use of genetic technology for therapeutic purposes in human beings. This paper considers only one element of this complex and dynamic situation, that of the regulatory climate surrounding the use of genetic screening in Europe. If, as many pharmaceutical companies concede, the key to the development of successful gene therapy products is the freedom to use genotyping and genetic screening without significant legal restriction, then the regulatory climate has a crucial significance for the future of this technology. It emerges, however, that there are other interests at stake apart from just those of the patients and the pharmaceutical companies. Insurance companies and employers are also highly interested in the acquisition and use of genetic information. There are arguments both for and against permitting such entities to use or request genetic testing and screening which shall be traversed in the body of the paper. However, the interest of insurance companies and employers in genetic information has stimulated a countercurrent of public pressure for restrictions on the use that can be made of genetic diagnostic information. In a number of countries, this pressure has generated enough concern to stimulate legislatures to seek to enact laws that curtail the use and acquisition of genetic information. This pattern has clearly emerged in the United States and there are strong indications that similar trends are developing in Europe. This article catalogues and critiques the laws and regulations currently affecting genetic screening and testing in Europe.