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Archive for Friday, February 2, 1990

DIFFICULT CHOICES

February 2, 1990

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The questions concerning the value and quality of life never seem to get easier.

A new screening test is capable of spotting about 75 percent of adults who risk having children with cystic fibrosis, and refinements may make the test even more accurate.

The test can detect whether an adult carries a mutant gene that causes the commonly fatal disease. One in every 25 white Americans carries a copy of the cystic fibrosis gene. They are well, but if they marry another carrier, there is a 1-in-4 chance that their children will have cystic fibrosis.

The test can be performed before conception, allowing parents to decide whether they want to risk having children with cystic fibrosis. Or it can be done to a fetus in the womb, leaving parents with the decision of whether to abort the fetus or allow it to develop.

That's where the really tough decisions come in. It's hard enough to be faced with the decision of whether to conceive a child who might be sick and die at an earlier age. It's probably even harder to decide whether to allow a pregnancy to continue if that outcome is almost certain.

Parents considering conception must weigh the odds. Is it better to take a chance than never to have children? They might also opt to use donated sperm for artificial insemination. Parents with a fetus already affected must decide whether to have a child whose life probably will be filled with pain.

Now that tests are available, ethicists say, parents may also have to deal with such complex issues as whether insurance companies might refuse to cover the costs of treating a cystic fibrosis patient whose parents knew ahead of time that they were both carriers of the mutated genes.

These are difficult questions. The life of a person with cystic fibrosis or any inherited disease may be shorter, but is it worth any less than the life of a healthy person? Is it better to know the chances of passing a disease along to a child or should parents simply accept the children who are given to them?

There is little chance that society will force the genie of medical progress back into its bottle. Knowledge such as that provided by the cystic fibrosis test is part of our lives, and we must learn to deal with it. The questions won't get easier.

Everyone's hope, of course, is that the knowledge that tests provide will help lead researchers to cures for cystic fibrosis and other diseases so that parents and doctors won't face such agonizing choices.

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