Privacy, property and the personality

Privacy issues in the field of genetics have been addressed by a number of international bodies in a variety of instruments. For example, the Bilbao Declaration highlights the main problem areas that are likely to arise from the work of the Human Genome Project, and pinpoints matters considered to be worthy of immediate attention by the legal systems of the world. The Declaration includes, ‘protection of the personal privacy or confidentiality of genetic information, and determination of cases in which it could feasibly be altered or overstepped’. Moreover, the interest in not knowing – a central focus of this work – has also been recognised. The Council of Europe states in Article 10(2) of its Convention on Human Rights and Biomedicine: ‘Everyone is entitled to know any information collected about his or her health. However, the wishes of individuals not to be so informed shall be observed’. Similarly, the UNESCO Universal Declaration on the Human Genome and Human Rights states in Article 5c: ‘The right of every individual to decide whether or not to be informed of the results of genetic examination and the resulting consequences should be respected’. These instruments embody the best and the worst features of the dilemma that we currently face. They recognise the value of an interest which has hitherto received short shrift, but offer aspirational means of protection that, in the absence of specific national interventions, have no substance.