Information and Informed Consent for Neonatal Screening: Opinions and Preferences of Parents
- 17 August 2007
- Vol. 34 (3), 238-244
- https://doi.org/10.1111/j.1523-536x.2007.00176.x
Abstract
Background: 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. Methods: 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. Results: 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. Conclusions: 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. (BIRTH 34:3 September 2007)Keywords
This publication has 7 references indexed in Scilit:
- Parental Attitudes and Beliefs regarding the Genetic Testing of ChildrenPublic Health Genomics, 2005
- Informed choice and public health screening for children: the case of blood spot screeningHealth Expectations, 2005
- Emphasizing parental choice on newborn screeningBritish Journal of Midwifery, 2005
- Newborn screening for Duchenne muscular dystrophy: a psychosocial studyArchives of Disease in Childhood: Fetal & Neonatal, 2002
- Informed Consent for Population-Based Research Involving GeneticsJAMA, 2001
- Feasibility of a Change in Service Delivery: The Case of Optional Newborn Screening for Duchenne Muscular DystrophyPublic Health Genomics, 2000
- Disclosure of Duchenne muscular dystrophy after newborn screening.Archives of Disease in Childhood, 1996