Information and informed consent for neonatal screening: opinions and preferences of parents

The current neonatal screening program ("the heel prick") involves taking a few drops of blood from almost every newborn in the Netherlands to determine whether the child is suffering from one of three congenital disorders: phenylketonuria, congenital hypothyroid, or adrenogenital syndrome. This study investigated the preferences and views of parents and future parents with respect to information about, and consent to, neonatal screening and the possible expansion of the program.

Seven focus group discussions took place with future parents, parents with a healthy child, and parents with children affected by disorders for which screening is possible, now or in the future (total of 36 participants). The discussions were audiotaped, transcribed, and analyzed for content.

Parents were not well informed about what the heel prick involves at present. Nevertheless, they see it as a routine procedure and do not think about the possibility of refusing it. If the heel-prick program were to be expanded, parents would like to be informed earlier, preferably during pregnancy. In addition, most parents preferred an opt-out consent approach.

If the neonatal screening program is to be expanded, parents would prefer for information about the program be given during pregnancy. In addition, they preferred an opt-out consent approach, on condition that screening was for the purpose of preventing irreversible harm. Parental opinion was divided on this issue if the aim of screening were to be widened.