Follow-up Support: How State-Level Newborn Screening Programs Educate the Parents of Newborns Identified as Carriers of Cystic Fibrosis
Capstone Project Committee: Nancy Callanan, MS, CGC, Lara Percenti, MS, CGC, George Retsch-Bogart, MD
A guiding principle in the history of newborn screening (NBS) is to ensure that the costs of screening are outweighed by the benefits. NBS for Cystic fibrosis (CF) has potential risks largely associated with the identification of CF carriers. These risks include loss of individuals’ rights to choose whether to pursue carrier testing for themselves, and anxiety felt by parents of carriers about the health and futures of their children. As North Carolina implements NBS for CF, efforts have been made to minimize these risks by using an educational tool and making a detailed follow-up plan for families of identified carriers. One way to assist in these efforts is to learn from the experiences of other states using CF NBS methods that identify carriers. The purpose of this study was to use semi-structured phone interviews with newborn screening program representatives in these states to gain insight into current standards of practice, and to make recommendations to the state of North Carolina as to how to optimize their resources for carrier follow-up and education. The results of this study show that North Carolina’s plan for CF carrier education and follow-up are consistent with standard practice in other states. Recommendations based on participants’ responses include empowering primary care providers, recognizing the limitations of readability assessments, using culturally as well as linguistically appropriate educational tools, planning for the systematic evaluation of educational tools, and tracking the uptake of genetic counseling services.
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