Patients and Biobanks

Abstract

The question about the privacy of medical information can be stated simply: To what extent can and should patients control what the medical record contains and who has access to it and for what purposes? Patients often have apparently conflicting views on this subject. On the one hand, we, as patients, say that we prize privacy and that we fear that information will be used to harm us. On the other hand, we value the benefits that come from improved communication among providers, such as having our visits covered by third party payers and advances in medical science, which often come from researchers and providers having access to large data sets. These apparently contradictory desires are not unique to health care. In many other arenas of life, we sell information about ourselves incredibly cheaply, as the grocery and drug store discount tags on our key chains attest. But areas of discomfort remain, one of which I will explore: the use of the contents of the electronic record for medical research. Evolving practices in this area raise a host of questions.