House bars use of genetic data in jobs, insurance

Scientists hope bias protections will spur research

May 02, 2008|By Jonathan D. Rockoff | Jonathan D. Rockoff,Sun reporter

WASHINGTON -- The House of Representatives passed legislation yesterday barring the use of genetic information in job and health insurance decisions, moving the government to the cusp of enacting the first federal law dealing with DNA-based medical care.

"It really is the law catching up to science," said Rep. Judy Biggert, an Illinois Republican who helped lead the 13-year fight for the legislation.

The House approved the measure 414-1, with Rep. Ron Paul, a Texas Republican, the lone dissenter.

The Senate passed the legislation unanimously last week.

The legislation, which President Bush is expected to sign into law, would bar employers from hiring, firing or placing an employee based on test results indicating a propensity to develop a disease. It would also prohibit insurance companies from denying or canceling coverage based on the information. Already, there are tests assessing a patient's risk of developing breast cancer and Huntington's disease.

Ever since scientists mapped the human genome five years ago, the growing body of knowledge has offered the promise of making medical care more preventive and effective. But doctors said that patients have refused to learn their risk of developing a disease - or find out the proper drug dose - for fear that their employers would use the genetic test results against them.

"It really has been this fear of discrimination that has been the largest barrier, we think, to widespread acceptance of genomic medicine," said Dr. Alan E. Guttmacher, deputy director of the National Human Genome Research Institute.

Potential test subjects mentioned the same concerns in refusing to participate in valuable research, setting back work that could lead to better treatment of diabetes, heart disease and other common conditions, scientists said.

"What this will do, hopefully, is make people feel more comfortable in participating in these research studies because, scientifically, it is clear that is where we have to go," said Michael Watson, executive director of the American College of Medical Genetics, representing laboratory directors and doctors.

The legislation would not cover use of genetic information in long-term care and disability insurance decisions. It also would not stop insurers from spurning coverage for those actually suffering from a disease.

Mark A. Rothstein, a University of Louisville bioethicist specializing in legal issues raised by genetics, worries that Congress will shift its attention elsewhere despite what he says is a strong need to deal with the related insurance issues.

"The worst thing that could happen is if it forestalls the enactment of really meaningful reform and people rely on the law, thinking it will solve their problems completely when that's just not true," he said.

jonathan.rockoff@baltsun.com

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