Medical Privacy: The Data Wars

Since Hippocrates, providers and seekers of medical care have sought to protect the confidentiality of their communications. Medicine has probably done better than most professions in realizing such aspirations—at least until the last few decades. But by the end of the twentieth century, a volatile combination of bureaucratized medicine and sophisticated information technologies had upended those expectations. As California privacy activist Beth Givens relayed it, today’s version of the Hippocratic Oath might state,

Whatever I see or hear in my attendance on the sick or even apart therefrom will be divulged to physicians, nurses, aides, surgeons, anesthesiologists, dietitians, physical therapists, admitting clerks, billing clerks, utilization review personnel, discharge planners, records coders, medical records filing staff, chaplains, volunteers, performance evaluators, insurers, medical transcriptionists, accrediting agencies, public health officials, other government officials, social workers, and employers. And to whoever else requests them for whatever reason.

All these parties can and often do gain access to medical records today—and so do many others. Anyone seeking to challenge or limit such access faces an increasingly unequal struggle. The reasons for this steady erosion of medical privacy have little to do with the values or wishes of patients—who almost universally would prefer more control over their own information, and less disclosure. Instead, they are enmeshed in the rapidly evolving politics and economics of medical care—and in the technologies for generating, transmitting, analyzing, and using patients’ medical data. These developments have turned data on patients’ medical conditions into a commodity—and created market pressures for appropriation and use of this commodity regardless of patients’ wishes and needs. An example of this phenomenon is the Bush administration’s proposed easing of restrictions on the release of patients’ medical data for a variety of marketing activities, with no ability for patients to opt out.

The Stakes

The reasons for the ever increasing pressure to record and disclose medical data go well beyond the fact that there are more interested parties than before. They have to do with the growing value of medical information. Genetic information, personal and family medical history, diet and lifestyle information—such data increasingly reveal not only the patient’s past but also his or her likely future. Massaged via sophisticated, computer-based analyses, such data have the potential to foretell what diseases and debilities we could be subject to in years to come. In a world where access to and use of ...