Feel Like a Number, by Robert Gellman, August 27, 1998
In 1996, Congress enacted a law that told the Health and Human Services Secretary Donna Shalala to select a standard unique identifier for individuals. The requirement received no public attention or debate at the time. Once Shalala began the process for selecting an identifier, however, anxiety about the loss of privacy exploded across the country. People are right to be concerned. A new federally issued health identifier surely would become a single national identifier used for all governmental and private purposes.
An endless list of users
Why am I so sure this will happen? For one thing, identifying individuals reliably and accurately is a problem for every institution. When you apply for credit, a job, welfare assistance or a driver's license, how does anyone know who you are? Most current identification documents have uncertain value. Controls over the documents are inconsistent, and they can easily be forged. The growth of identity theft is a symptom of the ease of providing false identification. For these reasons, every institution that needs to identify individuals wants a better form of identification.
A new patient identifier would serve that role nicely. The federal government would issue it after a careful review of everyone's identification. The number would have a check digit so that transposition errors could be more easily identified. In addition, there would be a token - a card with a picture or biometric identifier - that would offer further evidence that the card properly belonged to the person who presented it. Finally, a central registry of identifiers would help prevent counterfeits and phony numbers. Proponents of the health identifier say it would only be used for health purposes. They even point to statutory language protecting the identifier against other uses. But the protection is a figment.
Look at those who will need the health number in the ordinary course of their activities.
- First is the health-care establishment - providers, payers and insurers. Health care represents one-seventh of the overall economy, and that includes many institutions you might not think of at first. For example, supermarkets fill a large percentage of prescriptions, so they would have the number of many customers.
- Secondly, employers would have the identification number for their employees. Employers are the primary source of health insurance. Anyone want to make it easier for employers to track health information on employees?
- Third, many federal, state and local agencies will need the health identifier for welfare programs, public-health activities, and fraud and abuse prevention. The Internal Revenue Service would have the number because health-care costs may be deductible. And do not forget law enforcement. The same law that called for a patient identifier also gave the U.S. attorney general's office the power to administratively subpoena every health record in the country.
No guarantees from Congress
A recent study by the American Civil Liberties Union in Wisconsin found that of the 50 governmental units studied, 30 maintained identifiable or potentially identifiable health data. For example, the Department of Natural Resources had health data because disabled sportsmen receive licenses at a discount. Who else? Schools provide health care to students. Credit-card companies allow patients to pay medical bills with credit. Health researchers also use patient records. Further, all users would share data with lawyers, accountants, computer-service companies and others providing support services. These are just the institutions that have a legitimate need for a health identifier. We have not even considered the others who would demand the ability to use the number for other purposes, like credit grantors, life and auto insurers, and the passport office.
Why am I so sure that a health identifier would become a national identifier? Look at what happened to Social Security numbers. The original Social Security card said that it was "not for identification purposes." In 1974, Congress passed a law restricting new uses of the number by federal and state governments. Despite these attempts to control the use of the numbers, they are now required to open a bank account, get a job, apply for a credit card, buy or sell property, or obtain insurance. If you want a license for driving, fishing, hunting or running a business, or if you have a baby, you must disclose your Social Security number.
How did these new uses occur? Congress allowed and even mandated new uses of the Social Security number. The number is now legally available for dozens of purposes, and private use is unrestricted. Can anyone guarantee that a future Congress will not allow the health identifier to be used to stop illegal immigration, prevent welfare cheating or locate skipped parents? My guess is that the health identifier would make the Social Security number obsolete within a few years.
Understanding the consequences
It is not just the new number that is a concern. The health ID card easily could become an internal passport. Once everyone has a government-issued health card, it may become impossible for an American citizen to walk down the street without being asked to produce that card on demand by a policeman. People will not be able to use a credit card, cash a check, fly on an airline, check into a hotel, go to school, or enter or leave the United States without showing the card. Anonymous health care may no longer be available.
To be sure, a better system of identification might benefit patients, increase efficiency and improve research. These benefits, however, have not been quantified. It may be years before benefits are realized, and they may not come cheap. A new identifier easily could cost $10 billion or more. Before we take steps to create a new identification system, we need to pay more attention to the consequences. If we cannot offer Americans the assurance that the benefits are real, that the costs are not excessive and that civil liberties can be preserved, we should not proceed with a new system of health identification for patients.
Robert Gellman is a privacy and information consultant in Washington, D.C., and a member of the Health and Human Services Department's National Committee on Vital and Health Statistics.
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