Facing genetic defect, many reject testing

People facing possible genetic defects avoid pregnancy rather than undergo prenatal testing, a British researcher says.

University of Exeter researcher Dr. Susan Kelly calls this deep-seated ambivalence about the options available to would-be parents as choosing not to choose and says it is not a simple rejection of medical intervention, opposition to abortion or affirmation of a positive parenting experience with a child already born with a genetic problem. It is also a desire for more control by parents who have a heightened sense of the limitations of new reproductive technologies, Kelly says.

Kelly’s study, published in the journal Sociology of Health and Illness, finds more than two-thirds of parents with a child already affected by a genetic problem — all U.S. clients of a state-wide rural genetic outreach program — chose not to have any more children rather than accept tests to identify or to avoid the birth of an affected child. Of the parents who did have further children, a majority chose not to make use of prenatal screening or testing.

Prenatal testing procedures — to detect genetic conditions or fetal anomalies — were perceived by many parents as presenting rather than resolving risks, Kelly says in a statement.