• K S Hoehn, G Wernovsky, J Rychik, J W Gaynor, T L Spray, C Feudtner, and R M Nelson.
• Department of Anesthesiology and Critical Care Medicine, Children's Hospital of Philadelphia, PA 19104, USA. hoehn@email.chop.edu
• Arch. Dis. Child. Fetal Neonatal Ed. 2005 May 1; 90 (3): F267-9.

BackgroundAlthough parents of neonates with congenital heart disease are often asked permission for their neonates to participate in research studies, little is known about the factors parents consider when making these decisions.ObjectiveTo determine the reasons for parents' decisions about participation in research studies.MethodsQualitative analysis of the unsolicited comments of 34 parents regarding reasons for agreeing or declining to participate in research studies. Parents' comments were offered spontaneously during interviews about clinical care decisions for neonates with congenital heart disease.ResultsParents cited five types of reason for or against permitting their newborn to participate in research studies: societal benefit (n = 18), individual benefit for their infant (n = 16), risk of study participation (n = 10), perception that participation posed no harm (n = 9), and anti-experimentation views (n = 4).ConclusionAddressing parental decision making in the light of these reasons could enhance the parental permission process for parents of critically ill neonates.

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