Original Paper

Parental Opinions about the Expansion of the Neonatal Screening Programme
Symone Detmar^a, Nynke Dijkstra^a, Niels Nijsingh^b, Marlies Rijnders^a, Marcel Verweij^b, Esther Hosli<sup>a

a</sup>TNO Quality of Life, Leiden, and
^bEthics Institute, Utrecht University, Utrecht, The Netherlands

Address of Corresponding Author

Community Genet 2008;11:11-17 (DOI: 10.1159/000111635)

  Key Words

• Neonatal screening
• Parental opinions
• Disease scenarios

  Abstract

Background: Advances in genomics will open up opportunities in the fields of genetic testing, early diagnosis and disease treatment. While neonatal screening is the field of application par excellencefor these developments, the debate on its potential benefits and drawbacks is mainly theoretically driven and based on the opinions of professionals. Methods: We conducted a qualitative study of the perceptions, preferences and needs of parents (and parents to be) with respect to expansion of the neonatal screening programme. Seven focus group discussions were conducted. Using disease scenarios, 4 examples of conditions amenable to neonatal screening were discussed in depth. All focus group discussions were audio taped and content analysed. Results: Participants thought that the medical benefits of screening were very important for the child. Assuming the availability of effective early medical treatment, almost 100% would be willing to participate in a screening programme. If such treatment were absent, their potential willingness would be much lower. Conclusions: The divergence in attitudes and preferences we found in this study reflected the complexity inherent in any consideration of screening for additional conditions. To implement such options successfully and to direct applied research in genomics, it is important to develop a better understanding of the thinking of target groups, namely parents.

Copyright © 2008 S. Karger AG, Basel

  Author Contacts

Symone Detmar
TNO Quality of Life, Youth, Prevention and Activity
Postbox 2215
NL-2301 CE Leiden (The Netherlands)
Tel. +31 71 518 1832, Fax +31 71 518 1920, E-Mail symone.detmar@tno.nl

  Article Information

Published online: January 15, 2008
Number of Print Pages : 7
Number of Figures : 0, Number of Tables : 3, Number of References : 17