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J Obstet Gynecol Neonatal Nurs. 2012 Mar;41(2):191-200. doi: 10.1111/j.1552-6909.2012.01341.x.

Public attitudes about genetic testing in the newborn period.

Author information

1
Department of Clinical Epidemiology, Faculty of Medicine, Eastern Health and Memorial University, St. John's, NL, Canada.. Electronic address: holly.etchegary@med.mun.ca.
2
Department of Clinical Epidemiology, Faculty of Medicine, Eastern Health, St. John's, NL, Canada.
3
Department of Clinical Epidemiology, Faculty of Medicine, Memorial University, St. John's, NL, Canada.
4
Department of Genetics, Faculty of Medicine, Memorial University, St. John's, NL, Canada.

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.

[Indexed for MEDLINE]

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