Data Protection and the Promotion of Health Research

Abstract

This paper challenges the argument that data protection legislation may harm research by unduly restricting the flow of personal health information. I unpack the assumption that privacy is an individual right that must give way to research as a social good, and explore how data protection laws facilitate the flow of information for research purposes. I conclude that researchers should embrace data protection laws because they help construct trust in research practices, mitigate the commercial imperatives that flow from the fact that research is a public-private enterprise and protect the accuracy of data. Good research design should recognize that privacy is a social value and an essential element of psychological health and social relationships. And since research databases do not exist in isolation, researchers must respect the fact that the non-consensual flow of information poses risks of harm, including the secondary use of health research databases for social control, that must be managed.