Mandatory newborn screening has made the news several times this month. News articles have touched on the following themes: concerns about privacy and discrimination, unnecessary uncertainty and anxiety, and the constitutional of newborn screening programs.
The Citizen’s Council of Health Care (CCHC) filed a suit against the State of Minnesota and the Minnesota Department of Health on behalf of nine families. Even though lower courts found that newborn screening program does not violate the 2006 state genetic privacy act (Minn. Stat. § 13.386, subds. 1-3) Minnesota’s Supreme Court has agreed to review the case.
Parents whose infants bloods were possibly stored and used in research without consent has filed a class action lawsuit against the Texas Department of State Health Services.
Mandatory newborn screening tests can save lives and improve quality of life for children but can also lead to uncertainty for families who receive unclear screening results. A UCLA study refers to this as “the collateral damage of newborn screening.”
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This is a critical period for mandatory newborn screening programs. What are our responsibilities as genetic counselors? How can we improve mandatory newborn screening programs? Should information about newborn screening programs be more readily available? Should there be more support provided during the follow-up period?