04/17/97 - 02:16 AM ET
BETHESDA, Md. - All couples expecting babies or pregnancies should be offered tests for gene mutations that could cause cystic fibrosis in their children, an expert panel said Wednesday.
If widely adopted, such screening would be the broadest use yet of tests for specific inherited gene flaws.
The recommendation, from a panel convened by the National Institutes of Health, carries no official weight but could be highly influential in a fledgling field.
It "may serve as a guide for the complex testing issues that will undoubtedly arise with other inherited diseases," says panel chair R. Rodney Howell, head of pediatrics at the University of Miami, Florida.
Cystic fibrosis is the USA's most common inherited disease, affecting 25,000. It causes chronic lung infections and digestive problems. Although treatment has improved recently, half of people with the disease die before age 30.
Up to 1 in 29 Caucasians harmlessly carries one copy of the mutated CF gene; in about 1 in 900 cases, both members of a couple are carriers. Mutations are less common in other ethnic groups.
When two carriers have children, each child has 1 in 4 risk of CF.
Studies find at least half of couples offered testing during pregnancy accept it. And most carrier couples have their fetuses tested. When the fetus is positive for CF, many have abortions. In families who already have a member with CF, abortion is less common.
The panel stressed that it was not promoting abortion or pushing testing for couples who don't want it.
Counseling on the tests "should be extraordinarily non-directive," Howell says.
"It's not the consensus of this panel . . .to reduce the number of births of CF children," says James Evans, an internist and geneticist at the University of North Carolina, Durham.
Nevertheless, the clear prospect of wider use of abortion for genetic diseases disturbs some. "The very troubling message is that only the perfect deserve to live," says Kristi Hamrick of the Family Research Council, Washington.
The panel said tests also should be offered to individuals with a family history of CF and spouses or partners of adults with CF.
All the testing should be covered by insurance, it said.
CF gene testing has been available for several years but hasn't been widely used except in families with CF histories.
By Kim Painter, USA TODAY
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