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Prenatal Testing: How Much is Too Much Information?

November 28, 2011
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Bonnie Rough recalls seeing a series of billboards on the drive back from a camping trip with her husband several years ago. "The signs carried a strong message about [pregnancy], which felt like a slap in the face since my husband and I were trying to decide whether to have prenatal genetic testing for our baby."

Rough is a carrier of a rare genetic disorder called hypohidrotic ectodermal dysplasia. The disease is characterized by an inability to sweat, which, as Rough noted, may not sound serious, but it caused great suffering for her grandfather throughout his life. Rough and her husband ultimately decided in favor of prenatal genetic testing to determine whether their baby had the disorder.

Prenatal testing has its advantages. Parents may want to confirm whether their baby will be born with a genetic disease to prepare themselves emotionally and practically. Waiting for the results, as Rough notes, can be stressful.

But perhaps the most difficult thing about prenatal testing is the weight of knowing one's infant will be born with a genetic disorder if the test is positive. In this situation, a genetic counselor may help. Prenatal genetic counselors educate individuals and families about genetic disorders and can make recommendations on caring for a baby born with a genetic illness. Counselors can also inform expectant couples on other options, including adoption or ending the pregnancy.

Deciding against prenatal testing is one way to avoid the dilemma of what to do if test results indicate that the fetus has a genetic disorder. But according to Rough, "Choosing not to test is still a deliberate choice. If we didn't want our children [to have HED], we had to act."

Dr. Samuel Wood, medical director of Reproductive Sciences Center in San Diego, suggests couples undergo genetic testing prior to getting pregnant. But even if you're already pregnant, "You have to feel you made the best decision. Not all people who opt for testing end the pregnancy. They want to be sure they have the right care for the baby from minute one."

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