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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.“ |
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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? |
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Related
links:
Genetic
counselors do it all
MDA Quest article that explores how genetic testing has
both helped and complicated the issue of having children.
The Basics About Genetic Testing
From the PBS series “A Question of Genes: Inherited Risks.”
Compiling
your family medical history
Mayo Clinic article with link to a worksheet for creating a family
medical history.
Landon lecture explores question of
genetic testing
Harold Varmus, M.D., Director of the National Institutes of
Health
To read about a
new mutation screening test for CPT deficiency, visit On
the spot.
To read about
a family where genetic testing played a role in the diagnosis of CPT
deficiency, visit Half time. |
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The gene is more than a biological concept. Changes in the DNA are our source of joys and sorrows.
--Harold Varmus, M.D.
Genetics tests don’t just impact an individual, they impact an entire family. You have to think about whether you want to have the burden of the knowledge that genetic testing can provide.
Today there are tests for about 450 genetic disorders. However, the
majority are offered only to family members of someone with a genetic condition.
--PBS |
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