Medical information privacy and the conduct of biomedical research

Profound changes in the health care delivery system, the increasing pervasiveness of information technology, and dramatic advancements in research in human genetics are intensifying public concerns about the privacy of medical information. The author argues that some of these concerns, such as the fear that medical data could be used to deny health insurance or employment, are "pragmatic" and can be dealt with through the political process. But other, "ideologic" concerns tend to generate strong emotions and political positions that impede rational discourse and confound attempts to seek workable compromises. He stresses that the progress of medicine has long depended on studies of collections of empirical data about individuals, and discusses the federal oversight of research involving human subjects, including provisions in place to protect their privacy and maintain the confidentiality of data while at the same time permitting necessary access to data for research. He suggests that since every individual benefits from the accumulated medical knowledge base, everyone should contribute to the ongoing expansion and renewal of that base. The author then states nine principles crafted at the Association of American Medical Colleges to guide its thinking and advocacy efforts regarding medical-information privacy issues. (For example, "the free flow of identifiable medical information within the boundaries of the health care system is essential to the optimum provision of patient care and its payment.") He acknowledges that the flows and uses of identifiable patient information within our complex health care and research systems are bewildering and hard to explain to the public, which is deeply concerned about privacy in general, and especially medical information privacy. How to address this concern and at the same time protect the completeness, accuracy, and integrity of the medical record? The author offers no specific answers beyond those embodied in the AAMC principles, but maintains that a satisfactory solution will come only from carefully crafted federal legislation that creates a comprehensive, uniform, and effective system of workable protections of the confidentiality of medical information, while protecting the access needed to puruse the nation's ambitious agenda in health research.