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Newborn screening can cause unnecessary parental stress

Virtually all babies in the U.S. have their heels pricked soon after birth to get a blood sample for genetic testing. These "heel stick" tests identify rare metabolic disorders before they cause irreversible damage, but as more disorders are added to the screening many states now test for 30 or more false-positive results are on the rise. In the June issue of Pediatrics, researchers from Children's Hospital Boston report that false-positive results cause considerable parental stress, even when the baby proves negative on retesting, and that the stress could be alleviated by better education for parents and pediatricians.

Psychologist Susan Waisbren, PhD and Elizabeth Gurian, MS in Children's Division of Genetics interviewed 173 families who had received false-positive screening results and a comparison group of 67 families with normal newborn screening results.

Although mothers in the false-positive group were interviewed at least six months after their child's diagnosis had been ruled out, they reported more worry about their child's future and rated themselves less healthy than mothers in the comparison group. Fifteen percent said their child needed extra parental care, versus 3 percent of mothers in the comparison group. After adjustment for socioeconomic factors, both mothers and fathers in the false-positive group had higher scores on the standardized Parenting Stress Index (PSI); 11 percent of mothers (versus no mothers in the comparison group) scored in the clinical range, in which treatment might be prescribed.

Waisbren and Gurian also found that false-positive tests affected the parent-child relationship: parents in the false-positive group scored more highly on two subscales of the PSI: a Parent-Child Dysfunctional Interaction scale and a Difficult Child scale. (The first asks parents to rate their agreement with statements like "I expected to have closer and warmer feelings for my child, and this bothers me"; the second has st
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Contact: Jamie Newton
james.newton@childrens.harvard.edu
617-355-6420
Children's Hospital Boston
5-Jun-2006


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