Abstract
Family members do not enjoy the data protection they deserve with regard to shared genetic data. The Data Protection Directive 95/46/EC is orientated around the notions of ‘personal data’ and ‘data subject’ and its implementation throughout Europe leaves individuals who share data in an unfortunately uncertain position.
Member States have failed to provide for the possibility of multiple data subjects by appropriately qualifying their rights and freedoms (through Article 13). Rather than recognise rights without such qualification, the Courts are moving toward an understanding of ‘personal data’ that denies relatives the status of data subjects with respect to shared (genetic) data in any circumstances.
The consequence is a category of individuals — whom might be identifiably associated with data capable of affecting their enjoyment of fundamental rights and freedoms — subject to blanket exclusion from the protection envisaged by Directive 95/46/EC. The free-flow of information around Europe is undesirable until the data protection regime is configured to provide equal protection to all.
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