Parents' perceptions of research with newborns

To examine beliefs and attitudes of parents about research with babies.

Survey of 72 parents of newborn babies in the neonatal intensive care unit (NICU), and 159 parents of normal newborns using instrument designed for the study. The instrument included questions with graded responses and five research scenarios with varied risks and benefits. Statistical analysis included chi(2) analysis and Fisher's exact test.

Parents showed generally favorable attitudes toward research with babies. There were few differences between the two groups of parents, but there was a trend toward more trust in doctors by "NICU parents." Couples with newborns in NICU were significantly more likely to enroll their newborn in a study involving moderate risk and possible major direct benefit. Almost a third of the sample in both groups was willing to enroll their newborn in a study with moderate risk and no direct benefit.

Parents believe research is necessary and want to be asked for consent, but many feel they have limited knowledge and would depend on their physician's advice. The fact, that some might enroll their newborn in a study involving a risky procedure that would not benefit the newborn, supports the notion of vulnerability and emphasizes the fact that physicians must be alert to the possibility of coercion and undue influence.