Title: INTRODUCTION

Introduction

The use of health and health care data is emerging as new societal problem, due to ICT developments. An explosion of the use of ICT in health care (e.g. telemedicine, the Internet, health smart cards) marks the beginning of a wide range of uses of personal health data. Moreover, the use of data is not limited to administrative and medical issues of patients, but the availability of different databases and the potential coupling of these information sources enable to profile individuals. The possibility to use health information in a wide range of contexts beyond the personal clinical relationship should raise social, ethical and legal questions.

In 1999, The European Group on Ethics adopted an Opinion on the ethical aspects of the Information Society. The group listed issues of privacy, confidentiality, the principle of “legitimate purpose”, consent, security, transparency and the right for participation & education; these are closely related to the societal problem of profiling. More recently the European funded project ‘European Standards on Confidentiality and Privacy in Healthcare’ developed a proper framework in which the same principles or put forward.

It is thought that it would be useful for the NoE FIDIS to develop a tentative exploration on how the use of health (care) data, and in particular the development of technological applications, is related to the issue of profiling.  

We first explain the scope of the research, including its limitations, the perspective of the study and the formulation of the problem and the operational questions.