Reports from HRSA-funded projects focused on efficacy from family perspectives

Technology is rapidly changing; what opportunities and challenges does it present?

NBS, carrier screening, screening for hundreds of diseases pre- and postnatally, and DTC for newborns all present information with benefits and risks. What does existing data tell us about how people interact with information?

Advocates for screening and disabilities have had a great impact on funding, social awareness and public education. Sometimes these agendas appear to overlap and conflict. How do advocates influence the system?

Should residual blood spots be stored? With or without parents' permission? For what should they be used? Is the public's trust eroding while we wait to make decisions?

In the style of the European debate dinner: a time for eating, drinking and truthful debate. We will consider when screening should be a public health decision, when it is inherently personal, and what it means when something is ready for population usage, but not public health. These speakers will debate each other and engage the audience.

Screening for some conditions appears not to be appropriate in the newborn period, but may be very useful in childhood. Should childhood screening be a public health mandate, and if so, what criteria should determine the conditions?

Once newborn screening produces an abnormal result, what is the next step, and how is that information communicated?

Wil Yu, Office of the National Coordinator for Health Information Technology [download PowerPoint presentation]

Sharon Terry, Genetic Alliance [download PowerPoint presentation]

Amy Hoffman, American College of Medical Genetics [download PowerPoint presentation]