Collection and Protection of Personal Health Data

Gibbon S., Prainsack B., Hilgartner S., Lamoreaux J. (eds.) Handbook of Genomics, Health & Society. (London: Routledge, 2018).

Edinburgh School of Law Research Paper No. 2018/04

12 Pages Posted: 12 Mar 2018

See all articles by Edward Dove

Edward Dove

University of Edinburgh - School of Law

Date Written: March 8, 2018

Abstract

In this chapter, I reflect on key issues in the governance of the collection and protection of genomic data, with a focus on examples from European Union law. First, I discuss broadly how data privacy regimes regulate the collection and protection of genomic data. I examine how these regimes balance the needs of those wanting to collect and use genomic data for various purposes with the rights and interests of those from whom genomic data are taken and to whom they relate and implicate. In the genomic data context, those collecting and processing data include researchers (and their affiliated institutions), clinical organisations, and companies offering genetic testing. Following this discussion, I argue these regimes tend to generate or perpetuate several paradigms that can cause problems in an age of ‘big data’ analytics, direct-to-consumer genetic testing, and genomic data sharing initiatives. I then focus on two paradigms: first, the tendency in regulation to create bounded, siloed categories of personal data; and second, the ‘consent or anonymise’ paradigm. I conclude with a brief discussion of several emerging tools and initiatives that aim to strike a better equilibrium between robust exploitation of genomic data that promotes the public interest, while remaining consistent with the confines of existing law and preserving privacy as a fundamental value in biomedical research and clinical practice.

Keywords: law, genomics, data protection, privacy, personal data, health data

Suggested Citation

Dove, Edward, Collection and Protection of Personal Health Data (March 8, 2018). Gibbon S., Prainsack B., Hilgartner S., Lamoreaux J. (eds.) Handbook of Genomics, Health & Society. (London: Routledge, 2018). ; Edinburgh School of Law Research Paper No. 2018/04. Available at SSRN: https://ssrn.com/abstract=3137176 or http://dx.doi.org/10.2139/ssrn.3137176

Edward Dove (Contact Author)

University of Edinburgh - School of Law ( email )

Old College
South Bridge
Edinburgh, EH8 9YL
United Kingdom

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