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About the Project/FAQ

Results of the Event

A report of the results of this one-of-a-kind event may be found by clicking on this link here.

A group of Iowans learn about ethical, economic, and personal considerations of adding new conditions to the newborn screening process.  After the event, public opinion will be compiled and published for policy and future decision making. 

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What is it like to be part of a "Deliberative Community Engagement" Event?  Check out this video of a similar event in Minnesota. 

Why is the state doing this?

Iowa requires by law that every baby be screened for inherited conditions when they are born.  The new conditions are raising questions because of how the additional screening would affect Iowa families, treatment, medical professionals, and our communities.  The Iowa Newborn Screening program wants to reduce the risk of harm to Iowans, and wants to hear public opinion before moving forward.  No other state has asked the public community for feedback related to these issues.

What is the state going to do with the results?

The Iowa Newborn Screening program will review and analyze what people say during and after the event.  They will draft public policy (law) and push the recommendations forward.

Who can be a part of the Community Engagement Event?

Iowans throughout the state applied to be part of this event.  We recruited a diverse group of people based on gender, age, educational achievement, geographic location, race, and relationship with someone who has a disability. 

What is a Community Engagement Event?

Deliberative Community Engagement is a type of event that brings people together to listen to points of view and share their opinion.  The people involved are demographically representative of the state population and provide diverse response to an issue. The event responses will provide direct recommendations to lawmakers and program leaders.

Why have the event on a weekend?

The event is held over a weekend to allow more people the ability to attend without taking off time from work.  Participants are able to to reflect on the information overnight and provide thoughtful responses the next day.  People who attend are also welcome to discuss what they have learned with those at home.  

Who’s paying for this?

This event is funded by a federal grant from NewSteps and the Association of Public Health Laboratories to increase screening for new conditions on the recommended Newborn Screening Panel.  The project is carried out by the Iowa Department of Public Health.  Technical assistance has been provided by scientific advisors at the University of San Francisco and Baby’s First Test.

What will be discussed during the Community Engagement Event?

Conversation throughout the event will focus on ethics, health, and genetics.

What is the Newborn Screening Program? 

Newborn Screening is a set of tests done on every baby across the country within 24 hours of birth.  The tests include a few drops of blood, a hearing test, and a heart screening. The blood test is checked at a lab for over 50 health conditions which may not be immediately recognized at birth.  Though the conditions are rare, many of them would cause significant disability or early death, if not treated.  If a condition is detected, Newborn Screening staff assist the family in finding help and support for their baby’s health. Tell me more about Newborn Screening in Iowa.