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Identifiability, Genomics and UK Data Protection Law

In: European Journal of Health Law
Authors:
Liam CurrenCentre 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

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Jane KayeCentre 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

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Paula BoddingtonThe Ethox Centre, Department of Public Health and Primary Care, University of Oxford Old Road Campus, Oxford OX3 7LF UK

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Karen MelhamCentre 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

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Naomi HawkinsCentre 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

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Heather GowansCentre 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

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Nadja KanellopoulouCentre 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

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Online Publication Date:
01 Jan 2010
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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.

Title:
Identifiability, Genomics and UK Data Protection Law
Article Type:
Research Article
DOI:
https://doi.org/10.1163/157180910X516943
Language:
English
Pages:
329–344
Keywords:
personal data; DNA; genomic research; Data Protection Act 1998
In:
European Journal of Health Law
In:
Volume 17: Issue 4
Publisher:
Brill | Nijhoff
E-ISSN:
1571-8093
Print ISSN:
0929-0273
Subjects:
Health Law, Human Rights and Humanitarian Law

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