Knowledge, Technology and Law by Emilie Cloatre & Martyn Pickersgill

Author:Emilie Cloatre & Martyn Pickersgill [Cloatre, Emilie & Pickersgill, Martyn]
Language: eng
Format: epub, pdf
Tags: Science & Technology, Law, Jurisprudence, General
ISBN: 9781136002168
Google: yCmDBAAAQBAJ
Publisher: Routledge
Published: 2014-09-15T20:32:46+00:00

Effectively anonymised data clearly meet these requirements. As to identifiable data, the justification must be made. If applicable, the consequence is that data can be retained indefinitely (normally data must be destroyed after original purposes for processing are met), and data subjects need not be granted access to their data (otherwise a norm in the regulations) so long as research results are not published in an identifiable form. This is an attempt to relieve the regulatory burden of managing access requests, but this has been undermined by the fact that the Code suggests that granting such access is good practice (2012: 46). Moreover, the reduction in burden might be slight because while consent to research uses is not mandated, data subjects must still have adequate notice of the fact that data are being used for research. And if consent is not obtained and research data cannot be published in an effectively anonymised form, then subject access must be granted and the researcher is exposed to an action for breach of data protection (unless it could be shown that there was no alternative but to publish the results in an identifiable form).

The result is that research involving personal data continues to be constrained by the ‘consent or anonymise’ paradigm that has been so heavily criticised by the research community (AMS, 2006). This might be compounded further if current proposals to develop a European Data Protection Regulation are adopted in their current form. A January 2013 report from a European Parliament Committee advocated that research involving health data should only be conducted with data subject consent, which should be ‘freely-given, specific, informed and explicit’ (EP, 2013: 198). If this is not possible then research would only be permitted if it served ‘an exceptionally high public interest’ and data must then be ‘anonymised or at least pseudonymised using the highest technical standards’ (EP, 2013: 198). This trajectory for regulation is disconcerting because it suggests a widening, not a closing, of the gap between law and scientific practice contrary to accumulated experience. The slow pace and political charge of European legislative change are notorious, and the time to worry for data protection and health-related research has not yet come, but this phenomenon speaks to the deeper issues that concern us in this chapter.

A further example from data protection – this time from the European Court of Human Rights (ECtHR) – indicates that a proportionate and common-sense approach is not prevailing, making the imperative for change all the stronger. S and Marper v. United Kingdom (2008) concerned the lawfulness of the blanket policy in England and Wales to retain indefinitely and without consent DNA profiles and samples taken from persons arrested for (but never convicted of) criminal offences, however minor. It was held that such an indiscriminate policy was a breach of human rights that could not be justified. In the wake of the decision, the law was changed to embody a more proportionate approach involving time limits for retention (three years usually), but with

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