Public Law 110-374 - The Prenatally and Postnatally Diagnosed Conditions Awareness Act.

Abortion rates of children who have disabilities are high, in excess of 90% of all pregnancies of children who have Down Syndrome (Mansfield, Harper, Marteua, 1999). In consideration of recent conversations here I think that it is critical to highlight the passage of a new law. Public Law No: 110-374 is called the Prenatally and Postnatally Diagnosed Conditions Awareness Act. It is the purpose of this Act to--

(1) increase patient referrals to providers of key support services for women who have received a positive diagnosis for Down syndrome, or other prenatally or postnatally diagnosed conditions, as well as to provide up-to-date information on the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes;

(2) strengthen existing networks of support through the Centers for Disease Control and Prevention, the Health Resources and Services Administration, and other patient and provider outreach programs; and

(3) ensure that patients receive up-to-date, evidence-based information about the accuracy of the test.

This law, while opposed by some ardent partisans, had strong support from people on both sides of the abortion debate. Much of the impetus behind this legislation can be tracked back to the efforts of people like Dr. Brian Skotko. I strongly recommend you go to his site and read some of his work.

I read rather widely and this new law has barely gotten any attention.This law will strengthen the informed consent process around prenatal testing. Spread the word - this may be one of the most significant disability rights laws that we have seen in a very long time. It doesn't matter what side of the abortion debate you may be on - this law is a major step forward in providing real support for families and children.


References:


Mansfield, C., Hopfer, S., Marteau, T. (1999). Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: a systematic literature review. Prenatal Diagnosis, 19(9): 808–812.

Skotko, B. (2005). Mothers of children with Down syndrome reflect on their postnatal support.
Pediatrics, 115: 65-77

Skotko, B. (2005). Prenatally diagnosed Down syndrome: Mothers who continued their pregnancies evaluate their health care providers.
American Journal of Obstetrics & Gynecology, 192: 670-77

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