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As often is the case, modern science has surpassed the laws that regulate it, genetic testing being a case in point. Because legislation follows breakthroughs, what should have provided an opportunity to prevent illnesses or to prepare for their onset instead became an incentive to bury one’s head in the sand.
Women who carry a specific gene linked to breast cancer could benefit from knowing that and could take steps to prepare for or prevent its development. But after insurance companies began denying coverage to affected women, testing became a disincentive. Why risk learning if you’re likely to develop a deadly disease — which possibly could be prevented — when the knowledge alone could put you at financial risk? Expand that question by the number of genes humans carry and you can begin to understand the potential promise and peril each new scientific development entails.
Congress has now done the right thing in passing the Genetic Information Nondiscrimination Act. The legislation frees individuals to make the personal choice to have genetic testing without fear of increased insurance rates or denial, or potential employment bias.
The measure has been talked about for more than a decade and revisions have bounced back and forth between the House and Senate for more than two years. At the end of April, it passed the Senate 95-0. On May 1, it passed the House of Representatives 414-1.
President Bush has indicated he will sign the bill, as he should. It is a big step forward both in protecting individuals and in revolutionizing the American health-care system. It’s time to put more effort into prevention and the protection afforded by the Genetic Information Nondiscrimination Act can help make that happen.
This editorial represents a consensus of The News-Enterprise editorial board.