Assessing Ethical and Social Challenges in Newborn Screening Research

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. 

Click here to access and review the 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?

Please add your comments and thoughts below. Also, make sure to check back to see other responses and continue the discussion! We appreciated your input and feedback on this important document.

Summary: 
What are the ethical and social challenges in newborn screening research?
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Question Number: 
03
Monday, November 21, 2016

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Public Square

A series of open discussions about newborn screening, for practitioners, policymakers and the public.

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