Email this page
Print this page
Genetic Alliance (GA) announced on May 24 that it has received two cooperative agreements from the Department of Health and Human Services, Health Resources and Services Administration (HRSA). The advocacy organization will partner with the Center on one of the three-year grants, a quantitative measure of the public’s awareness of newborn screening (NBS) and changes in parental attitudes and responses with increased information about this form of screening.
Recent advances in technology have increased the number of conditions that can be screened for shortly after birth, and the amount of information revealed about the family. Though false positive results and identification of carriers have been part of NBS since phenylketonuria and sickle cell disease screenings were first introduced, the expansion of screening and the corresponding increase of positive results present new challenges for the public health system. Consumers will play a major role in advancing the number of disorders that can and will be considered for NBS.
The HRSA-funded project will promote family-centered care as an outcome of newborn screening by determining the information necessary for parents to make informed decisions, as well as examining the publics’ response to various newborn screening scenarios. In addition to GA and GPPC, the Save Babies Through Screening Foundation and Hunter’s Hope Foundation will be involved in the project. "We are pleased to lend the Center's expertise in assessing public attitudes and preferences to this important project," says Kathy Hudson, director of the Center. "Figuring out what parents already know and believe about newborn screening is the first step toward improving education of new parents and improving health care for newborns and the quality of life for the entire family."
The other grant is a qualitative assessment that focuses on the experience of families and professionals with respect to false positive screens and carrier identification. The results of this project will be used to develop models for improving newborn screening in the context of the medical home.
These projects will put forward models based on consumer and medical home perspectives to minimize harm and maximize the benefits of the NBS system.
