Should Employers Be Told?

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February 12 2014 18:04
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Predictive Probes: Scientists Are Focusing On Genes Predisposing People to Illnesses --- New Methods Will Facilitate Prevention but Will Raise Ethical, Legal Questions --- Should Employers Be Told?
Author: By Jerry E. Bishop
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Abstract (Abstract): Several years ago, Nancy Wexler 's mother died of Huntington 's disease, a hereditary and always-fatal affliction that strikes in midlife. Since then, Ms. Wexler, the 38-year-old
Since then, Ms. Wexler, the 38-year-old president of the Hereditary Diseases Foundation in Santa Monica, Calif., has lived with the uncertainty of whether she, too, inherited the deadly gene.
That uncertainty may soon be resolved. A few months ago, scientists announced they were on the verge of completing a new test to detect the gene for Huntington 's disease (formerly called Huntington 's chorea). But deciding whether to submit herself to the test is an anguishing choice for Ms. Wexler. "If I came out lucky, taking the test would be terrific, of course," she says. "But if I came out unlucky, well. . . ."
Her dilemma is an extreme example of the kind thousands of Americans will face in the not-too-distant future as scientists learn how to pinpoint genes that cause or predispose a person to a future illness.
The test to detect the Huntington 's-disease gene should be ready within one to two years. Researchers already have detected some of the genes that can lead to premature heart attacks and, in the near future, hope to spot those that could predispose a person to breast or colon cancer. Eventually, scientists believe they will be able to detect genes leading to diabetes, depression, schizophrenia and the premature senility called Alzheimer 's
Among their targets are the genes that cause atherosclerosis, the clogging of the arteries with fatty deposits. Atherosclerosis is a slow, silent disease that can lead to heart attacks in the adult years. And recently it has become clear that the rapidity with which arteries clog is determined by defects or variations in any of at least eight genes that control the way the body uses and disposes of fats. Genetic probes will be able to detect these genetic defects and variations long before a heart attack develops.
An early demonstration of that new predictive power already is under way involving an inherited disorder called familial dysbetalipoproteinemia. Victims of the disorder, which is uncommon but not necessarily rare, have such high amounts of cholesterol and other fats in their circulation that the blood serum is actually cloudy. The consequences begin to show up in early adulthood in men and later in women when the arteries in the limbs and heart become severely clogged. Unless treated, the victims suffer heart attacks in their 20s or