Newborn Screening: Financial, Ethical, Legal, and Social Issues Project (NBS FELSI)

This Hawaii Genetics Program has been awarded funding from the Health Resources and Services Administration (HRSA) to complete a three-year project regarding parent attitudes towards false positive newborn screening results.

The Genetics Program is partnering with State Newborn Screening Programs in Alaska, California, Hawaii, Idaho, Oregon, and Washington to develop educational materials for parents who receive newborn screening results for their children, with an emphasis on materials for parents of children who receive false positive results.

The educational tools and support systems that help parents understand newborn screening results are essential to helping families through this time in their lives. However, the types of materials and interventions that parents want have not been thoroughly studied. In particular, the input of parents who have received false positive results is very important in guiding the development of future interventions and strategies. As more disorders are added to the state newborn screening panels, it becomes even more important that parents understand the non-consequences of a false positive result.

The project will be conducted over a three-year period in several phases::

Phase 1: Gathering Information from parents and providers

Project staff will interview:

  1. parents whose children receive newborn screening results
  2. the child’s pediatrician
  3. the Newborn Screening Program in the state of the child’s birth

We will ask parents about the educational materials they wish they would have had, and the types of educational strategies (e.g., types of written information, timing of education) they think would be ideal. Pediatricians and state Newborn Screening Program representatives will be asked about the terminology they use when discussing newborn screening results, the timing of test results, and any extenuating circumstances surrounding the results (i.e., Did the family have to travel a distance to reach medical care?).

Phase 2: Development and Testing of Educational Materials and Strategies

The project will use the information gathered in phase one to make recommendations for the development of model educational materials and resources for parents from diverse backgrounds. The materials will aim to help parents understand newborn screening results, particularly false positive results. The materials and resources developed through the project will be tested and refined using parental satisfaction and knowledge gain assessments. In addition, strategies to aid primary care providers identify and use the developed materials and resources will be identified and implemented.

Phase 3: Dissemination of Project Products

Project products, including validated educational materials and strategies, will be disseminated for use by all the project collaborators, including State Newborn Screening Programs in Alaska, California, Hawaii, Idaho, Oregon, and Washington. Dissemination to the national newborn screening community will also be promoted.

The results of this project will complement the purpose and goals of both the Hawaii Department of Health Genetics Program (HGP) and the project’s State Newborn Screening Program collaborators – to provide accurate, evidence-based, culturally competent genetics information and support to families.