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  Ethics Matters

National Health Identifier: Big Help or Big Brother?

by Jeffrey P. Kahn, Ph.D., M.P.H.
Director, Center for Bioethics
University of Minnesota

Public hearings are now underway on plans to develop a way to assign a single computer identifier for every American citizen. The plan would create a way to collect health information about us from the time we're born until we die -- a lifetime medical record. The federal government is charged with creating the system as part of the law passed by Congress in 1996 that allows individuals to take their health insurance with them when they change jobs.

Center for Bioethics

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Related CNN story:
Clinton administration mulls medical history database - July 20, 1998

The unique identifier is intended to let health information like medical records move easily as well. Supporters of the identifier argue that the plan offers more accurate medical history and therefore improved medical care, and potentially vast amounts of high quality information for public health use.

Detractors argue that the plan undermines individual privacy and opens the door for government intrusion into every detail of life--shades of Big Brother. Both are probably right in some respects, and the trick will be to create a system that delivers the proposed benefits while at the same time adequately protecting the privacy of individuals.

Whose information is it, anyway?

This is an issue about access to private information and how well we can protect it, and so the Social Security number ought to teach us a lesson. It was not intended to be a universal identifier when it was introduced in 1935, but over the years it has become a nearly universal, and universally accessible way of identifying Americans. The moral of the story is that it's much too easy to access a person's Social Security number and far too much information can be learned about them with it, all without their knowledge or consent.

In the wrong hands information about individuals can easily be abused. And creating a central source for such information makes abuse more likely. But the truth is that most of the information about us that would be collected by the proposed health identifier system now exists, but in numerous smaller databases instead of a single large one.

Protecting privacy: individual control and penalties for misuse

Collecting medical information is important -- both to serve our health as individuals and our shared interests by promoting public health. But sensitive information should only be disclosed with the consent of individuals except in a few special cases, such as recording and tracing infectious diseases, or anonymous research, where individual identity is removed from records.

The technology exists for encrypting computerized information, and the key for unscrambling our data could easily be kept by each of us much like the PIN numbers we use in automated teller machines or for telephone calling cards. Our most sensitive health information could even be kept behind a more secure "fire wall" that required a different consent for access.

Thirty-five states have laws intended to protect medical information, but we need federal health data privacy regulations that would limit who has access to health information, and for what purposes.

We should all be concerned about the misuse of private information about us, whether it's related to our health, finances, legal history, or other parts of our lives. But unique identifiers are not the problem, access to personal information is. We need to focus more on this message than on the messenger of a national health identifier.

National Health Identifier: Big Help or Big Brother?
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"Ethics Matters" is a bi-monthly feature from the
Center for Bioethics and CNN Interactive.

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