20 - Genetic discrimination

Summary

The argument in this chapter proceeds from an empirical fact and a conceptual dissatisfaction. ‘Genetic discrimination’ is now an ethical and legal issue. In countries like France, Denmark and Norway insurance companies and employers are banned from asking individuals to undergo or disclose results from genetic tests. There is backing in the Council of Europe's Convention on Human Rights and Biomedicine and the Universal Declaration on the Human Genome and Human Rights. The term ‘discrimination’ is explicitly used in these documents. In Sweden, legislation was recently proposed by a parliamentary committee. The proposals affect both the insurance sector (previously regulated in a trade agreement) and the employment sector (previously unregulated).

The genetic discrimination scare is exacerbated by plans to build population genetic biobanks and databases in several countries, like Estonia and the UK. In Sweden there is no such comprehensive genetic project underway, but the PKU register holds blood samples from every individual born in Sweden since 1975. These large-scale biobanks raise ethical issues not only about consent procedures, data protection, and whether people should have a right to know (or not to know) what their genetic make-up looks like. They also raise issues about the ethical viability of third-party use. Genetic information is ever becoming more and more accessible. With the advent of large-scale biobanks and genetic databases, an increasing proportion of the population will have undergone genetic testing.