When I was a fetus, I was left alone. My amniotic fluid and chorionic villi were untouched, and I arrived apparently normal, except for a mark on the part of my anatomy where a bullet “directly bit” Forrest Gump.
Perhaps that’s too much information. But TMI is precisely the problem when prenatal genetic testing detects a DNA sequence variant, but we don’t know exactly what it means. The fuzzy line between “unusual or uncertain” and “abnormal” in test results can cause great anxiety. This is especially so when “abnormal” before birth doesn’t affect health after, thanks to a characteristic of genes termed incomplete penetrance: not everyone with a genotype develops the corresponding phenotype.
A recent article in Genetics in Medicine examines the distress of a sample of women receiving “abnormal” fetal test results. Lead investigator Barbara Bernhardt, MS, a genetic counselor and co-director of the Penn Center for the Integration of Genetic Healthcare Technologies, reports that some of the participants called the test results “toxic knowledge.”
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