Using NHS Patient Data for Research Without Consent

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Abstract:

Is it legal for researchers to use electronic patient records from NHS databases, without explicit patient consent? In this article we describe the main NHS patient data systems used for large-scale data-driven medical research, the Secondary Uses Service and the General Practice Research Database. Both suffer from a serious lack of transparency, with patients not adequately informed of the potential research uses of their records. Patients are not asked to give clear, specific, free and informed consent for research; are not offered unambiguous and effective opt-outs; and are misled about the level of anonymisation of their data and the likelihood of re-identification. We show that English common and statute law in this regard is so opaque and capable of arbitrary application that it fails the 'quality' requirements of 'law' of the European Convention on Human Rights. We also demonstrate that is is clearly incompatible with the relevant provisions of the main EC data protection directive (Directive 95/46/EC). This is problematic for patients, but also for researchers and commercial companies relying on data that are unlawfully processed in European law terms. If it is to be accepted that the public wants medical research to happen without consent in some circumstances, then a social consensus needs to be formed as to when that should be permitted. The discussion should be open and honest about exactly what data, in what form, are being discussed, for what kind of research; and about the real limits of de-identification in the emerging era of ubiquitous data generation, sharing and matching. We hope this article will contribute to that debate.

Document Type: Research Article

DOI: http://dx.doi.org/10.5235/175799610794046186

Publication date: December 1, 2010

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