Insurers battle gene-testing fears

CHICAGO - As scientists celebrate the completion of a working draft of the human genome, the health insurance industry is trying to calm consumer fears that insurers will not pay for genetic testing and that screening results may be used to deny coverage.

Genome mapping is just a start, and important medical discoveries using the information are still a long way off.

But consumer advocates say the findings are generating fear of discrimination by insurers, employers, schools, adoption agencies and others seeking to use the genetic information to their advantage.

"There is concern among women who say, 'If I'm screened for breast cancer and I find I have it, I could be denied coverage'," says Jeremy Rifkin, president of the Foundation on Economic Trends, a Washington group that focuses on biotechnology.

"A lot of women are not taking the test because once they find out it's in the family tree they're afraid their daughters and sisters will be denied insurance."

Mr Rifkin says some women are already shying away from getting tested for mutations of the BRCA1 and BRCA2 genes that have been linked to increased risks of breast and ovarian cancer.

Insurance industry officials say laws already prohibit them from denying coverage based on a pre-existing health condition.

"This is a big breakthrough and there are logically going to be concerns and questions people have," says Susan Pisano, a spokeswoman for the American Association of Health Plans.

"If you are 20 years old and you know you are at risk for some major chronic condition, people are asking the question, 'Rather than using [the information] to help me, will that information haunt me?'

"What I'm saying is that, by and large, we're prevented from using that information to discriminate."

In fact, Aetna, the largest US health insurer, says it already has an extensive policy on genetic testing and that it posts the criteria for coverage on its website.

The company says it has provided confidential cover for the Myriad Genetics BRAC Analysis genetic test since 1998.

Those test results go directly to the requesting physician and do not come back to Aetna, it says.

Still, consumer groups are sceptical about the insurance industry and say that existing laws do not fully protect patients.

"I don't think their words equal their deeds," says Jim Duffett, the executive director of the Illinois Campaign for Better Health Care.

"Their action has been denial, denial, denial, and that's a big fear we have with genetic testing."

- REUTERS