Programs and Policy Public Square
The Public Square is an open space dedicated to conversations around newborn screening. The Public Square is not just a forum – it’s a commitment to new ideas, knowledge sharing, and bringing together a range of communities and experiences within newborn screening to improve education and awareness. Whether you're a health professional, parent, policymaker, researcher, or someone simply interested in newborn screening or health education, we welcome you to join the conversation!
In February 2017, Baby's First Test and Children's National Medical Center hosted an educational webinar about critical congenital heart disease (CCHD), which affects thousands of babies in the United States each year. The webinar's speakers included Lisa (Hom) Wandler, RN, Esq. from Children's National Heart Institute and Erin Palmer from the 2016 Consumer Task Force on Newborn Screening. Lisa Wandler discussed the evolving science and policies around CCHD since it was added to the Recommended Uniform Screening Panel (RUSP) in 2011. Erin Palmer shared her family's experience with CCHD and her current project as a Consumer Task Force member.
You may watch the full webinar here.
During this webinar, Lisa Wandler discussed educational priorities for CCHD, including reaching underserved populations and educating pediatritians and obstetricians on the latest research and best practices around CCHD screening. Erin Palmer also discussed the importance of education and follow-up around CCHD among midwives.
In your experience, what do you see as educational needs for CCHD screening and follow-up?
This month’s public square focuses on the ethical and social consequences of adding a new condition to newborn screening panels.
It can be hard to know which medical conditions should be added to state newborn screening panels. Experts review pilot studies to weigh the benefits and harms of screening all babies for the new proposed condition. In the past, these pilot studies usually did not explore ethical and social issues. For example, should the state newborn screening program tell a family if their child is a carrier for a disease but does not actually have the disease?
A team of researchers and newborn screening officials wrote ethical and social questions for researchers to include in pilot studies. The table linked below puts these questions in boxes to help researchers think of all the questions that they may want to study. In this public square, we are seeking your input on this table.
1. Are there ethical or social issues we are missing in this table?
2. Are there stakeholders we are not including that should be added to the table?
3. Are there questions or sections in the table that are unclear?
4. Do you have any other general comments about the content or the layout of the table?
The moderator of this public square will inform participants at least 2 weeks in advance of the public square's last day for comments. Please add your comments and thoughts by then. Also, make sure to check back to see other responses and continue the discussion! We appreciated your input and feedback on this important document.
September is Newborn Screening Awareness Month, and Baby’s First Test, along with organizations, states, providers, and families across the nation, celebrate the month by helping raise awareness about newborn screening. This is typically done by social media campaigns, creation of new educational materials, hosting events, and sharing stories and experiences with newborn screening.
In 2013, the United States celebrated 50 years of newborn screening and to commemorate this special occasion, the “Be Bold Wear GOLD” campaign launched during Newborn Screening Awareness Month. Throughout the month, the newborn screening community rallied together around the principle that all babies deserve a healthy start. With “Be Bold Wear GOLD” as one example of an awareness campaign, we would like to hear about your education and awareness efforts during Newborn Screening Awareness Month. Whether you’re a parent, work for a state, organization or hospital, or if you’re simply interested in newborn screening, join us in sharing your plans for September, how you will define success, and add your ideas on how we work together to maximize our awareness efforts for the month.
Comments will be closed October 1, 2016.
Welcome to the Newborn Screening Public Square! To learn more, check out our latest webinar introducing the public square here.
Have questions or thoughts about the public square? Add your comments below!