Policy versus privacy: an analysis of ethical issues in a health monitoring project

Lies Lammens, Vrije Universiteit Brussel

The objective of this paper is to increase awareness about ethical issues arising in health research. More specifically, we examine the tension between the demand for knowledge, and the protection of privacy and democracy in societies with an increasingly automated public health information infrastructure. On the basis of the example of a Belgian health monitoring project, we propose a model which could be used as a framework for the ethical evaluation of data collection projects. This model points out various ethical implications of such projects. Crucial in our model is the dimension of time. Hence, implications both on a short and long term are taken into account. Even though there is no ideal solution to overcome the ethical dilemma discussed here, we argue that a stable democratic system in societies is crucial for protection against potential abuse of data, and makes an extensive health monitoring compatible with privacy and democratic values.