Medical privacy and research

Abstract

Medical records are increasingly kept in electronic form. The existence of large medical databases raises new questions about privacy and control over that information. When records exist in a form that can easily be shared with others, there are legitimate privacy concerns. This paper argues that this fear is not properly a privacy issue, but rather concerns the viability of social norms that govern the doctor-patient relationship and the use of medical information that is obtained within that relationship. When medical information is used for research purposes, the information is transformed into data elements and is no longer about the individuals. Information obtained either in the ordinary course of providing medical care or in the course of conducting research studies for which individuals have given their informed consent does not require further consent to be used as data in research files as long as it is not individually identifiable.