Genetic information and testing in insurance and employment: technical, social and ethical issues

Abstract

The present paper examines the professional and scientific views on the social, ethical and legal issues that impact on genetic information and testing in insurance and employment in Europe. For this purpose, many aspects have been considered, such as the concerns of medical geneticists, of the insurers and employers, of the public, as well as the regulatory frameworks and unresolved issues. The method used was primarily the review of the technical, social, economical and ethical aspects of advances in genetics and the concerns of parties who are involved, that is, the insurers, the employers and the public. The existing guidelines and legislation on this topic were also reported. Then, the method was to examine the issues debated by these parties in Europe, as well as by 47 experts from 14 European countries invited to an international workshop organized by the European Society of Human Genetics Public and Professional Policy Committee in Manchester, UK, 25–27 February 2000. The result of this was that the most important issues raised by genetic information and testing in insurance and employment in Europe include a need for clear definitions of terms used in genetics, declaring the grounds on which genetic information is or is not used, and promoting confidence between the public and the insurance industry. There is currently very little use of genetic information in relation to employment, but the situation should be kept under review.