Data Protection and Genetics: Medical Research and the Public Good

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Abstract:

This paper addresses three questions: (1) whether genetic data and genetic material are subject to data protection law; (2) whether genetics research for medical purposes constitutes a public good; and, having answered yes to both questions, (3) to what extent, and in what way, the value of medical genetics research as a public good justifies its exemption from or within data protection law. Using the privacy framework under Article 8 of the European Convention of Human Rights and Gewirth's concept of a generic condition of agency, the paper suggests a model for assessing what constitutes a proportionate degree of exemption. Applying this model, which allows the key considerations on each side to be given their full due, it argues that privacy/data protection values and medical research values are better viewed as being co-operative and mutually reinforcing rather than conflicting.

Keywords: Data protection; anonymisation; consent; generic condition of agency; genetic data; genetics; medical research; privacy; public good; public interest

Document Type: Research Article

Publication date: January 1, 2007

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  • Until 2007 the King's Law Journal was known as the King's College Law Journal. It was established in 1990 as a legal periodical publishing scholarly and authoritative Articles, Notes and Reports on legal issues of current importance to both academic research and legal practice. It has a national and international readership, and publishes refereed contributions from authors across the United Kingdom, from continental Europe and further afield (particularly Commonwealth countries and USA). The journal includes a Reviews section containing critical notices of recently published books.
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