Slaughter’s bill provides safeguards against misuse of genetic information
The truth is supposed to set you free. But, without years of work by Western New York’s Rep. Louise Slaughter, learning the truth about your own genetic makeup could leave you free of a job, or of your health insurance.
After a 95-0 approval in the Senate Thursday, Slaughter’s Genetic Information Nondiscrimination Act is heading back to another quick House vote. Then it will go on to President Bush, who has said he will sign it.
It has taken 13 years for Slaughter, a Fairport Democrat trained as a microbiologist, to get this part of the law to catch up to that part of science. The problem at first was ignorance, as few people even knew what genetic screening was. Then it was fear, as business interests worried about being saddled with genetically suspect workers or patients.
Just as genetic testing in itself does not cure any disease, the new law will not cure the primary genetic defect present in the American health care system - the desire of all too many insurance providers to screen out customers who will actually need their product. But the law, like the tests it will now encourage, will give people an important tool to keep themselves healthy.
New genetic analysis can tease from any person’s DNA the fact that he or she will need to be carefully watched for the onset of some particular malady, from some forms of cancer to Parkinson’s disease. That can be crucial to early detection, timely treatment and, in some cases, a cure for disabling or fatal diseases.
But that same ability also brings out a bit of incredibly intimate information. It could, absent this legislation, be used by an employer or a health insurance provider to fire or deny coverage to anyone who had bothered to make this otherwise sound medical decision.
Slaughter told of women who could have benefited from being screened for a predisposition to breast cancer, as well as the doctors who treat them, avoiding the tests for fear of that information being used as a pretext to deny those women employment and/or (because the two are so often linked) health insurance. This law will ban such a practice, and protect employers from having their entire work force saddled with higher premiums just because one or more of their coworkers has received such a test.
What the law won’t do is stop insurance providers from jacking up the rates on people who have a real disease, not just the genetic marker that makes them a likely candidate. That means that, in the madness of employer-provided or individually purchased health coverage, a madness that no other First World nation lives with, the most dreaded disease of all remains the pre-existing condition.
And that, apparently, is so encoded in the genetic structure of the system that it may never be rooted out.
Found here.
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