The Anonymisation of Research Data — A Pyric Victory for Privacy that Should Not Be Pushed Too Hard by the EU Data Protection Framework?

Abstract:

Personal health data is essential to many forms of scientific research. Such data may come from a large variety of sources including electronic health records (EHRs), datasets used for previous research and from data linked to biobanks.

European data protection law recognises that in addition to using consent as a legal basis for the processing of personal health data for scientific research, such data may be used without consent where it is in the ‘public interest’.

Despite the existence of such a legal option, ethics bodies in a number of states have shown reticence to utilise it, often pushing researchers into either obtaining consent or anonymising the data in question. Whilst the latter option may be appealing from a legal point of view, if carried out properly, the result may be that the research value of the data is reduced or even destroyed.

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