Privacy in Medical Research: Recommendations for Interpretation and Action

PRIVIREAL IS A EUROPEAN COMMISSION FUNDED PROJECT EXAMINING THE IMPLEMENTATION OF DIRECTIVE 95/46/EC ON DATA PROTECTION IN RELATION TO MEDICAL RESEARCH AND THE ROLE OF ETHICS COMMITTEES. THIS VOLUME RELATES TO THE THIRD STAGE OF THIS PROJECT ON RECOMMENDATIONS AND SUGGESTIONS TO BE MADE TO THE EC ON THE IMPLEMENTATION OF THE DIRECTIVE AND THE REMIT TO BE GIVEN TO RECS TO PROTECT RESEARCH PARTICIPANTS’ RIGHTS. THIS VOLUME COMBINES BOTH INTRODUCTIONS TO THE TOPIC, REPORTS FROM MANY OF THE 26 EUROPEAN COUNTRIES PARTICIPATING IN PRIVIREAL, AND THE OVERALL RECOMMENDATIONS DEVELOPED BY THE SERIES EDITORS FOR SUBMISSION TO THE EC. THESE RECOMMENDATIONS CONCERN ISSUES SURROUNDING THE IMPLEMENTATION OF THE DIRECTIVE, LAWS IN COUNTRIES WHERE THE DIRECTIVE IS NOT YET IMPLEMENTED, THE REQUIREMENTS AND PRACTICE OF RESEARCH ETHICS COMMITTEES IN RELATION TO DATA PROTECTION, AND ANY OTHER MATTERS DEEMED RELEVANT.