Privacy and Health Research. Heightened Public Concern


The public are rightly concerned about the erosion of privacy of information about health, for at least the following reasons taken together.

  • There has been a rapid increase in the amount, diversity, and intimacy of health-related data recorded.
  • Computerization of health data storage, manipulation, linking, searching, transfer, and other processing continues to increase. Its progress is inevitable. This is bringing higher vulnerability to both accidental and intentional disclosure of sensitive data, and to misuse and abuse.
  • The scale of health-related databases, and of prescribing and billing records, has increased beyond all precedent, as has the interlinking and transferring of data among different, and different kinds of, databases, often at great distances, often internationally.
  • Increasingly, health care is being provided by large, complex institutional and commercial systems—managed care in the U.S., and versions of it, or nationalized health care (which, in a way, is managed care taken to extreme) in many other countries. This is bringing much more auditing, analysis, and critical evaluation of healthcare practice and economics data, and increasing commerce in medical data per se.
  • The number and diversity of parties seeking access to health data continue to increase.
  • New kinds of research are being conducted, such as detailed human genome mapping, and elaborate computerized studies in large multipurpose health databases.
  • Individuals feel a general loss of control over their privacy, both health-related and in most areas of life.
  • There continue to be intrusions into health data by employers, schools, insurors, courts, newsmedia, and various snoops. This can be personally offensive, and it can harm individuals' employability, access to insurance or financial loans, personal relations, and community standing.

For the general public all of this has induced a cynical resignation, with undertones of resentment. There seem to be relatively few complaints about privacy intrusions by research. But important research access to data may well suffer, largely for wrong reasons. And research programs do probe people's bodies and lives in intimate ways, record and analyze data that people feel sensitive about, and move data around.