Some info isn't as unique or private as it seems

Robert Gellman

Imagine it's a few years before the turn of the century. Scientists have produced a technological miracle with almost unlimited promise for improving health. A new way of examining human tissue permits the collection of information never before available. Physicians can diagnose diseases years before they can be found by conventional methods. This new technique even allows for predictions about hereditary illnesses.

Are you thinking of genetics? Think again. What I had in mind was the emergence of the X-ray machine, which was invented in 1895.

Yet the similarities between X-ray photography and gene mapping are striking. In both instances, people responsible for early discoveries were awarded the Nobel Prize. Both technologies captured the popular imagination and offered new forensic tools as well as new threats to privacy.

Modern genetics has generated public fears, and the fears have led to demands for special restrictions on collection, use and disclosure of genetic information. Many states have already passed laws, and Congress has been struggling with proposals for several years.

Is it possible to identify genetic information and control its collection and disclosure? That's not a simple question. At a basic level, anyone can discern some genetic information just by looking at an individual. Sex and skin color are genetic characteristics. Thus if laws or regulations attempt to treat specially any information that reveals genetic makeup in some way, they'll run into trouble almost immediately.

Will it help to limit the definition of genetic information to data from medical tests? Probably not. A basic blood test reveals blood type and other characteristics that are genetically determined.

Let's try again. This time, I will limit our definition to genetic information that derives from DNA testing. By simply identifying the process by which genetic data was derived'in this case via DNA analysis'we now produce a clear distinction.

But so what? If a chromosome test reveals that you are female, can you really expect to slap a special rule on that information'data that is available from numerous other, unprotected sources?
It can be impossible to categorize some types of information for regulatory purposes. You may know it when you see it, but that doesn't always lead to a meaningful definition.

People are legitimately concerned about use of genetic data as a basis for discrimination, and that is a focus of much of the proposed legislation. Remember, however, that the United States already prohibits discrimination based on race, sex and age, characteristics usually visible to the eye. Therefore controlling access to data isn't necessarily required to prohibit its misuse.

The broader lesson is that people often overreact to novelty. New technology doesn't always present new problems. Public perceptions make a big difference in how technology is accepted.

Something universally accepted in the real world can easily be seen as a sinister plot when amplified by the Internet. Think about that before promoting your new Web site or information collection scheme as something brand-new. Genetics is already paying a big price for public fears. It is especially easy for a government activity to be seen as Orwellian.

Robert Gellman is a Washington privacy and information policy consultant. E-mail him at [email protected].


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