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Is it 'Me' or 'We'? Genetic Relations and the Meaning of 'Personal Data' under the Data Protection Directive

Gertz, R

European Journal of Health Law   11 (3) 231-244

September 2004

On 27 November, 2003, the Icelandic Supreme Court declared the Health Sector Database Act to be unconstitutional. This piece of legislation enabled the firm deCODE Genetics to set up a database consisting of the existing medical and genealogical records of the entire Icelandic population, living and dead, as well as a tissue bank containing samples of every living Icelander. Given the proliferation of genetic databanks in many countries, this decision could be of considerable international importance. Crucial to the decision was the problem of granting legal standing to the appellant. This was solved through a reductionist approach by defining personal data as encompassing both the appellant’s medical records and those of her deceased father, thus providing a definition for ‘personal data’ focussing on a blood relationship that, if adopted as a precedent, provides a multitude of new questions and problems, such as the question of legal standing for an individual belonging not to the deceased’s blood relatives but to his social kin. This article will therefore examine the meaning of ‘personal data’ within the European data protection regime and the consequences of its possible meaning in the genetic context.