The United States Senate is to pass a new law preventing insurance companies and employers from using genetic tests to deny insurance coverage, raise insurance premiums or make hiring and other employment decisions. A compromise bill was passed last week, a few days after a Senate committee gave it its unanimous backing. It seems that, after many years of discussion and disagreement, the US is about to ban genetic discrimination.
This is an important step forward. Few would disagree that employers and insurance companies should be prevented from using information from genetic tests to discriminate against their employees or customers. Insurance companies might dispute the necessity of such a legislative move (they claim not to be interested in most genetic information about their customers), but nobody wants to see unfair practices taking place.
But some have suggested that there is another good reason for the new legislation. 'Scientific advances in the field of genetics hold great promise for medical prevention and new treatment and therapies', said the Senate committee chairman Judd Gregg. 'However, this promise will go unfulfilled if individuals are afraid to get genetic tests or seek genetic counselling for fear of losing health insurance or facing discrimination in employment.' Francis Collins, director of the National Human Genome Research Institute, echoed Gregg's sentiments. 'If this passes, a major barrier to the adoption of genetic tools for the prediction of future illnesses will be removed. We already see this barrier taking a toll right now in research on genetics, because people fear discrimination. This will tell people that it's safe to know about your own genome.'
Is this true? Are people holding back from acquiring genetic information about themselves because they distrust employers and insurance companies? There must certainly be lots of incidents in which people at high risk of a genetic condition are put off having a diagnostic or predictive test because of fears about how the test results might be used. But the genetic diseases for which most people might have a test today are usually very rare and the tests for them generally provide meaningful and unambiguous information. For these people, the anti-discrimination bill will come as welcome news. Whether the new law will open up more widespread use of genetic testing - to aid drug prescribing, or to predict susceptibilities to common diseases, for instance - remains to be seen. It might be that more basic limitations (such as how meaningful or useful such genetic information is) are hindering widespread adoption.