The Iowa Newborn Screening (NBS) Program is one of several NBS programs nationwide to consider adding additional genetic screenings to the newborn Dried Blood Spot screening. Iowa is the only state to ask for public input into the ethical and social considerations of adding new conditions to the Newborn Screening Panel. Our project is receiving national attention.
Goals of the Project:
- The Project will assure that parents of Iowa newborns have the information they need to ensure participation in the Iowa Newborn Screening Program.
- Participants in the Iowa Community Engagement for Newborn Screening Project will have an opportunity to influence/impact the addition of conditions to the Iowa Newborn Screening Panel.
Why it’s important:
- Iowa mandates the newborn screening of every baby, for all conditions on the panel. Is continuing to add conditions creating state mandated research? Or do the conditions have enough treatment and medical expertise to deliver at the public health level?
- Adding conditions with late onset types (like the three conditions recommended) may increase false positive results and diagnostic dilemmas.
- The addition of new conditions may increases the cost for families and could impact insurance coverage.
- Decisions to add conditions to the screening affect the quality of life for Iowa’s youngest residents and their families.
- Engaging the public helps ensure that Iowa’s public health newborn screening program is conducted ethically and that public funds are utilized appropriately.
- Public recommendations will assist in guiding appropriate policy recommendations around Iowa’s Newborn Screening program in the future.