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Protections for those prenatally diagnosed with Down syndrome

The link between prenatal testing and abortion raises significant questions around informed consent that have not been adequately addressed, but that are important to ensuring that families are aware of the liabilities and benefits of testing, and certainly before they act upon it to end the life of their child. 

Senator Sam Brownback and the late Senator Ted Kennedy introduced into the U.S. Senate the Prenatally and Postnatally Diagnosed Conditions Awareness Act in 2007. The act was intended to “increase the provision of scientifically sound information and support services to patients receiving a positive diagnostic test for Down syndrome, or other prenatally or postnatally diagnosed conditions.” The act was passed by the Congress and signed into law by President George W. Bush on October 8, 2008. Unfortunately, the bill was never funded. 

In the absence of funding for the Kennedy-Brownback bill, advocates in various states have passed their own versions of prenatal education legislation intended specifically to require information regarding the positive outcomes of giving birth to a child with Down syndrome. 

The National Down Syndrome Society (NDSS) provides a “Prenatal Information State Law Toolkit” for those wishing to propose legislation in their states. The toolkit includes model legislation, sample press releases, and samples of testimonies.

You can also click here to view a copy of the Pennsylvania law that the Jerome Lejeune Foundation supported and that was signed by the governor on July 18, 2014.


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