Identifiability, Genomics and UK Data Protection Law

Authors: Curren, Liam¹; Boddington, Paula²; Gowans, Heather¹; Hawkins, Naomi¹; Kanellopoulou, Nadja¹; Kaye, Jane¹; Melham, Karen¹

Source: European Journal of Health Law, Volume 17, Number 4, 2010 , pp. 329-344(16)

Publisher: Martinus Nijhoff Publishers, an imprint of Brill

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Abstract:

Analyses of individuals' genomes — their entire DNA sequence — have increased knowledge about the links between genetics and disease. Anticipated advances in `next generation' DNA-sequencing techniques will see the routine research use of whole genomes, rather than distinct parts, within the next few years. The scientific benefits of genomic research are, however, accompanied by legal and ethical concerns. Despite the assumption that genetic research data can and will be rendered anonymous, participants' identities can sometimes be elucidated, which could cause data protection legislation to apply. We undertake a timely reappraisal of these laws — particularly new penalties — and identifiability in genomic research.

Keywords: Data Protection Act 1998; personal data; genomic research; DNA

Document Type: Research article

DOI: http://dx.doi.org/10.1163/157180910X516943

Affiliations: 1: Centre for Health, Law and Emerging Technologies at Oxford (HeLEX), Department of Public Health and Primary Care, University of Oxford Old Road Campus, Oxford OX3 7LF UK 2: The Ethox Centre, Department of Public Health and Primary Care, University of Oxford Old Road Campus, Oxford OX3 7LF UK

Publication date: 2010-08-01