Families affected by genetic disorders often have mixed reactions when offered genetic testing, says Doris Teichler Zallen, author of Does It Run in the Family? A Consumer’s Guide to DNA Testing for Genetic Disorders (Rutgers University Press, 1997).
Zallen, an expert in genetic technologies and bioethics, interviewed dozens of families who had confronted this issue.
One group of sisters who went together for genetic counseling said they became closer through the experience even though they did not all choose to be tested.
But in some families, genetic testing was perceived as threatening. One woman with a child newly diagnosed with cystic fibrosis said the issue of testing caused a big hullabaloo among relatives. “Now I rain on everybody’s parade,” she says, “because I am a reminder of what could happen.”
Zallen notes that of those who opt for testing, most are satisfied that they finally have an answer, even if the uncertainty is replaced by a mixed bag of reactions and consequences.
“Genetic tests can be of real value,” Zallen concludes, ”but they are not right for everyone.“
QUESTIONS TO CONSIDER
Who will the information affect? A fetus, a child, you, your siblings?
What will you do with the information?
How much does it cost?
How reliably will the test detect a mutation?
If the test is negative, are you free of the disease?
If the test is positive, can you do anything about it?
Do you mind if your insurance company knows you were tested?
Source: When does genetic testing make sense?