A secondary benefit: the reproductive impact of carrier results from newborn screening for cystic fibrosis.

ABSTRACT:

Purpose

Newborn screening (NBS) for cystic fibrosis (CF) can identify carriers, which is considered a benefit that enables reproductive planning. We examined the reproductive impact of carrier result disclosure of NBS for CF.

Methods

We surveyed mothers of carrier infants after NBS (Time 1) and 1 year later (Time 2) to ascertain intended and reported communication of their infants' carrier results to relatives, carrier testing for themselves/other children, and reproductive decisions. A sub-sample of mothers was also interviewed at Time 1 and Time 2.

Results

The response rate was 54%. A little more than half (55%) of mothers underwent carrier testing at Time 1; another 40% of those who intended to undergo testing at Time 1 underwent testing at Time 2. Carrier result c

SUBMITTER: Bombard Y 

PROVIDER: S-EPMC5319861 | biostudies-literature | 2017 Apr

REPOSITORIES: biostudies-literature