NDSS is a pro-information organization, and one of our key legislative priorities is ensuring that all women and families across the country receive the most accurate, up-to-date, evidence-based information available about Down syndrome when receiving a prenatal or postnatal diagnosis. (Click here to see the full NDSS Position Paper on Down Syndrome Prenatal Testing.) As such, NDSS supports state pro-information laws that ensure that health care providers provide quality information to anyone receiving a diagnosis of Down syndrome.
The Prenatally & Postnatally Diagnosed Condition Act (PL 110-374) was enacted into federal law in 2008 to increase the readiness of accurate, up-to-date and balanced information about Down syndrome to women and families considering prenatal testing. Unfortunately, the federal law was never funded and, in the absence of funding, advocates in several states have taken up the issue with their state legislatures. The focus on federal and state legislation is a result of the many ways to screen for and diagnose Down syndrome during a pregnancy, including new noninvasive prenatal tests (NIPTs) available in select markets.
As of May 2016, the following states have passed Down syndrome information bills:
* We recommend using the language of these bills only.
NDSS offers its affiliates and its Governmental Affairs Committees (GAC) this pro-information state legislation toolkit, which was created with help from the Massachusetts Down Syndrome Congress (MDSC). The goal of this toolkit is to help states to enact legislation to promote the sharing of accurate, up-to-date and evidenced-based information on Down syndrome to women who receive a prenatal or postnatal diagnosis.
EXAMPLES OF ENACTED LAWS
Please follow the links above that are marked with an asterisk (*) to see the enacted state laws that use the language we recommend.
Press release examples
examples of one-pagers
Examples of correspondence
For More Information
For more information, please contact Heather Sachs, NDSS Vice President of Advocacy & Public Policy, at [email protected].
Page last updated: November 22, 2016