Public attitudes about genetic testing in the newborn period.

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.