Genetic privacy in the European Union - exploring the impact of the proposed Data Protection Regulations. A. de Paor Centre Disability Law & Policy, Natl Univ Ireland, Galway, Galway, Galway, Ireland.
With advances in genetic science and technology, genetic information is becoming increasingly available and accessible. However, the deluge of genetic information raises many ethical and legal issues that may threaten advancing science, in the absence of appropriate regulation. One such issue is the violation of genetic privacy. Genetic information is a sensitive and inherently personal type of information that can reveal intimate details about an individual and an individuals family. In light of the sensitive nature of genetic information, the potential abuse is clear, as is the desire to protect such information from access and disclosure. Therefore, there are compelling reasons to maintain the privacy and confidentiality of genetic information. In the European Union (EU), the Data Protection Directive (introduced in 1995) provides a strong data protection framework that protects the privacy of personal information. However, there is currently no substantive provision for genetic data and no specific reference to this category of information, indicating a gap in the privacy protection for genetic data in the EU. Recent developments indicate an intention to include genetic data within the scope of EU data protection laws, with the European Commission proposing a new Regulation. With these new Regulations, the Commission aims to develop an updated data protection framework. It is committed to reform and modernise data protection legislation, in line with the realities of todays society, and changing norms. The draft Regulations identify genetic data as a category of personal data designated for special protection. Genetic data is defined broadly to include all data, of whatever type, concerning the characteristics of an individual that are inherited or acquired during early prenatal development, thus presumably incorporating all genetic data as well as family medical history and other genetic related health information. As regards protection of genetic privacy in third party contexts, these draft Regulations are welcomed as explicitly recognising genetic information as a category that deserves protection. This paper will explore the issue of genetic privacy in the EU. It will examine the current data protection framework, as well as the proposed reform of the EU data protection framework and the impact that these reforms will have on the protection of genetic data.
You may contact the first author (during and after the meeting) at