Access to genetic testing touches on human rights (self-determination, privacy, equal treatment) and therefore ought to be regulated rather than left to market forces. Developing an appropriate regulatory framework requires combining several types of regulations (legal as well as professional rules) depending on the nature of the standards (substantive or technical). At a time of economic globalisation, however, nations tend to become minor regulatory players on the world scene. They are made even less significant by the increasingly free movement of people and by the spectacular growth of telecommunications and e-commerce. The ‘interconnected global village’ therefore calls for stronger involvement of international and supranational organisations and for promoting international harmonisation. It is suggested that, as a first step, the Council of Europe could play a decisive role by drafting an additional protocol on medical genetics to the 1997 Convention on Human Rights and Biomedicine.

Keywords:
Genetic testing, Access to genetic services, Regulatory framework, European law
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© 2001 S. Karger AG, Basel
2001
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