Privacy protection and population-based health research

Abstract

In this article we discuss obstacles of privacy protection measures to population-based health research and we give suggestions for policies facilitating this research as well as protecting the privacy of the patient. Privacy is the capacity of the individual to determine which information is communicated to whom. Population-based health research is research among human populations and refers to health services research, medical sociology, epidemiology, occupational health, social dentistry, family medicine a.o. Although population-based health research focuses on groups and not on individuals, the access to health and other vital records and the possibility to identify the individuals for subsequent interview and study are of crucial importance. In various countries the legislation regarding privacy protection requires that medical records should not be disclosed unless with the consent of the individual. Therefore it forms a major obstacle to population-based health research as this research is very difficult to carry out if prior consent is required in order for the investigator to have access to medical records. Population-based health research has given us important knowledge about the etiology of many diseases and the effect of interventions. In the case of population-based health research disclosure of patient information without the explicit patient consent should be seriously considered. This disclosure should only be permitted if an institutional board has studied the project plans of the investigators and has carefully watched the privacy aspects of their studies.