Privacy and Health Research. The International Flow of Data

05/01/1997

Health data are zipped around the world all day every day, by government research agencies, pharmaceutical firms, academic researchers, and many others. Data on Americans are transferred, American institutions do much data-transferring, and data are transferred for important American purposes.

A great many health data are imported into the U.S., and many are exported. Such U.S. agencies as the Centers for Disease Control and Prevention, working cooperatively in and with many other countries, import personally identifiable data, under safeguards. The National Heart, Lung, and Blood Institute, in joint programs with Canada and European countries, exchanges data internationally, under safeguards. So does the National Cancer Institute.

Huge volumes of clinical-trial data collected in medical centers are transferred all the time, on behalf of companies that develop and manufacture pharmaceuticals, diagnostics, and medical devices, and the National Institutes of Health, and the World Health Organization, and many others working to improve medical "tools." So are drug, device, and vaccine adverse-effect reports, which provide essential feedback.

Thus personally identifiable health-research data are exchanged internationally, for very good reasons, all the time, and inevitably this international data flow will increase. The importance of pressing for uniform international standards for protecting privacy, confidentiality, and security, is evident.