The authors report no conflict of interest or relevant financial relationships.
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Research
Public Attitudes About Genetic Testing in the Newborn Period
Article first published online: 16 MAR 2012
DOI: 10.1111/j.1552-6909.2012.01341.x
© 2012 AWHONN, the Association of Women's Health, Obstetric and Neonatal Nurses
Issue
Journal of Obstetric, Gynecologic, & Neonatal Nursing
Volume 41, Issue 2, pages 191–200, March/April 2012
Additional Information
How to Cite
Etchegary, H., Dicks, E., Hodgkinson, K., Pullman, D., Green, J. and Parfey, P. (2012), Public Attitudes About Genetic Testing in the Newborn Period. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 41: 191–200. doi: 10.1111/j.1552-6909.2012.01341.x
Publication History
- Issue published online: 16 MAR 2012
- Article first published online: 16 MAR 2012
- Manuscript Accepted: OCT 2011
- Abstract
- Article
- References
- Cited By
Keywords:
- newborn screening;
- genetic testing;
- public opinion;
- attitude;
- expecting parent
ABSTRACT
Objective
To measure attitudes toward newborn genetic testing in our jurisdiction.
Design
A cross-sectional, pen-and-paper survey.
Setting
The survey was administered to the general public and prospective parents in Eastern Canada between April 2010 and December 2010.
Participants
A total of 648 individuals completed surveys.
Results
Positive attitudes were found toward newborn genetic testing, regardless of whether an effective treatment existed for the disorder in question or whether the disorder developed in adulthood. A majority agreed (69%) that testing should be available for any condition to assist with future reproductive decisions. Most respondents (93%) agreed parents should provide informed consent before newborn screening (NBS) was undertaken and that parents had a fundamental right to access NBS if they so choose.
Conclusion
Interest in NBS for genetic disorders is generally high, regardless of whether an effective treatment exists. Findings lend support to the expansion of NBS panels to include those disorders currently lacking treatment but highlight consumers’ desire for informed consent before testing is undertaken.