Questioning Mandatory Newborn Screening Programs

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.

MN Supreme Court to hear newborn screening case

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.

Class action filed over newborns’ blood

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.

New UCLA study raises questions about genetic testing of newborns

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.”

**click on each underlined title to read the original news article**

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?

 

1 Comment

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One response to “Questioning Mandatory Newborn Screening Programs

  1. Amy

    Given the large deficits in many state budgets, and the fact that the state usually pays for newborn screening programs, this seems a very relavent topic. In our state, the program (including some MD, GC, RD time, AND formula for life) is funded not by taxpayers, but by hospitals. Our hospitals pay a fee for each newborn screening card. They are mandated by state law to perform NBS, so must purchase these cards. Due to costs increasing for the program overall, the costs of the cards went up. Now our state hospitalist association is asking for the program to be cut. Our state has also experienced a shift in gubernatorial reign from D to R, and our newly minted leader is cutting services across the board. While our program will likely survive, we will probably lose funding for formula. I realize many state NBS programs do not provide formula, but many do mandate insurance coverage for it, and ours does not. Scary times. We are working on launching a PR campaign that highlights the positive aspects of NBS, but we don’t know what the future will hold.

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