Data protection and epidemiologic research

The collection, aggregation and use of personal information are of increasing concern and importance to modern society. Yet data protection laws, designed to regulate trade in personal data, can pose important burdens on epidemiologic and social research. After a brief overview of epidemiology, the paper offers an analysis of surveillance and data protection, highlighting the concept of the ‘data image’, and the role of data protection in ensuring human rights in surveillance societies. The paper then delineates the potential conflict or tension between the goals of data protection and epidemiology. The paper concludes by observing that while the European Union recently has exempted public health datasets from strict conformity with the principles of data protection, there is considerable need to define ethical and technical standards for the management, use and disposition of personal health data used in research settings. As data protection standards are about to be introduced into Europe, a unique oportunity exists for epidemiologists and other social researchers to consult broadly to define standards for the management of personal data.