Parental Use of Newborn Screening Results for Reproductive Benefit in a Metabolic Genetics Setting

2017

Objective : To assess if parents of children with Metabolic conditions alter their reproductive behaviors in future family planning. Background: Statewide newborn screening programs were established in the 1960s, with the goal of identifying newborns with harmful or fatal conditions not evident at birth. In most cases early treatment or intervention may prevent these babies from experiencing the most serious consequences of their condition. However, there have been ongoing debates about including conditions with later onsets or minimally effective treatments. Proponents suggest that identification of an affected child through newborn screening may allow for better reproductive planning, but it is unclear if parents are using the information in this manner Conclusions:Overall, 32 parents (73%) did not change their reproductive behavior. This data suggest that parents of children with milder conditions such as SCAD or MCAD deficiency may be less likely to change their reproduction plans, but the small size did not allow for any correlations to be found. Additional studies are necessary to explore the reproductive behavior of parents of children with metabolic conditions in a larger and more diverse sample.

Performing Research or Evaluation

Health-Related Activities

Professionals and Para-Professionals

None

State

N/A