Research, ethics and privacy: the limits of knowledge

This paper considers the need for personal privacy within the context of epidemiological research. It concludes that privacy can be protected by early anonymisation and aggregation of personal health data without prejudicing the viability of a research project. During the period before anonymisation, however, a secure legal framework is necessary to prevent unauthorised access to potentially sensitive information. Within such a framework ethical codes need to be identified and monitored by an appropriate Local Research Ethics Committee (or a Multicentre Ethics Committee acting on behalf of a number of local committees). Present arrangements within the health care system in the UK for the handling of such data remain very unsatisfactory and put patient privacy at risk.