- The Washington Times - Wednesday, November 16, 2005

Genetic profiling means different things to different people. Serious people think seriously, though not always favorably, of the idea.

Dr. Philippa Brice, of the Cambridge Genetics Knowledge Park in England, has her doubts. “With the recent advent of so-called ‘bar-coding babies,’ whereby newborn babies are assigned an electronic barcode linked to their unique [National Health Service] number, personal details and medical information,” Dr. Brice says, “how close are we to the more controversial idea of extending this scheme to include genetic screening of all babies at birth?”

Why do such screening? Some genes are associated with the likelihood or certainty of developing certain diseases or conditions. Some of these genes are known to us. With genetics advancing rapidly, much more is probably going to be known soon. In England, there is discussion of putting a baby’s entire genetic code in its medical record.

Questions will arise as the practice becomes cheaper and easier and, potentially, more widespread.

Advocates point to medical uses. A doctor, knowing that you, an adult, have a genetic predisposition to heart attack or breast cancer, can take preventive measures. From a technical standpoint, this is inarguably a good idea.

A little trickier is the question of whether you want to know, 20 years in advance, that you are going to come down with some horrible disease. If it will be curable, fine. You prevent it if possible, or eliminate it when it shows up. But if it won’t be curable, or will be fatal … is it better not to know?

A crunch comes in hiring. If a company knows that John has a substantial probability of developing, say, schizophrenia, it might not want to hire him. In terms of dollars and cents, this seems reasonable: After spending years training him, Amalgamated Widgets doesn’t want him institutionalized.

Nobody else would want to hire John, either. Then what? Does the government put John on pre-emptive disability, even though he is not yet disabled and may never be? His entire life would be made disagreeable on the basis of a possibility.

Being able to foresee the medical future would present grave problems for the insurance industry. The idea of insurance is that everyone pays in a little, the amount being proportional to the likelihood that someone will come down with an expensive disease.

But if the company knows that Sally will develop Alzheimer’s, it will seek either to reject her as a client or charge her much higher premiums. How can such a situation be handled equitably? Would the company have to tell her what was going to happen? Would her doctor have to?

Technically, profiling is far from a done deal. As Dr. Brice says, there are barriers to profiling, such as “the current lack of clinical utility; whilst our understanding of genetic influences on health and disease is rapidly increasing, with the exception of some genetic mutations known to be associated with inherited diseases … we do not yet have the ability to reliably pinpoint valid genetic markers associated with health outcomes.”

But we are getting there.

Solutions? IBM has come up with a simple one: The company says it won’t use genetic information in hiring or in awarding benefits. Legislatures and Congress wrestle with privacy laws. But neither can address the curious question of how much we really want to know about our medical future.

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