Just got this from NDSS..............
Affiliates:
We wanted to update you on the "Prenatal Testing Bill" that we told you about last week. The bill has been introduced to the Senate as S.609, the Prenatally Diagnosed Condition Awareness Act, and is co-sponsored by Senator Sam Brownback of Kansas and Senator Ted Kennedy of Massachusetts. It will be announced formally in a press conference today, Wednesday March 16. To read the full text of the bill, visit:
http://capwiz.com/ndss/issues/bills/?billnum=S.609&congress=109&size=full
NDSS and NDSC have issued the following joint position statement on the bill. We will be following this bill closely and will keep you updated on developments and any action steps. If you have questions about our position on the bill, please contact Arlene Berman at 917-408-6244 or 800-221-4602, ext. 6244.
Joint Position Statement by the National Down Syndrome Congress and the National Down Syndrome Society on the Prenatally Diagnosed Condition Awareness Act
The National Down Syndrome Congress (NDSC) and the National Down Syndrome Society (NDSS) have worked for decades on behalf of individuals with Down syndrome and their families. We understand firsthand the critical need for accurate, up-to-date information and support for parents who have a child diagnosed with Down syndrome.
However, we have concerns about specific elements of the Prenatally Diagnosed Condition Awareness Act:
The bill does not require that information and support services be offered to parents whose child receives a postnatal diagnosis of Down syndrome. It is just as important to provide these services to parents who choose not to undergo prenatal testing and have a child with Down syndrome. And as the recent studies by Brian Skotko of Harvard demonstrate1,2, health care providers are not adequately delivering either the prenatal or postnatal diagnosis. We hope that this legislation will be broadened to address the need for information in a postnatal diagnosis
While we appreciate the consideration given to patient privacy concerns in the data collection sections of the bill, we would like to see an informed consent provision that requires a disclosure statement outlining how the patient’s information will be used. This would further ensure privacy for patients.
We recommend that decisions regarding distribution of funds provided by this bill place an emphasis on partnerships between health care groups and disability organizations.
The bill does not specify how the information and support services provisions would complement the pre-existing programs for families already being implemented by NDSC, NDSS and other organizations. Between NDSC and NDSS, the following programs and services are currently in place:
Resource information telephone hotlines, e-mail links and Web sites;
Web sites and printed materials that address scientific information, clinical course, life expectancy, development potential and quality of life for individuals with Down syndrome;
National and local family support services and groups; and
Awareness and education programs for health care providers about Down syndrome.
We strongly encourage Congress to consider how these successful existing programs and services can be expanded to increase their reach and impact, rather than creating entirely new programs and services that would be duplicative and not cost-effective.
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1Skotko, Brian. "Mothers of Children With Down Syndrome Reflect on Their Postnatal Support," Pediatrics 115 (2005): 64-77.
2Skotko, Brian. "Prenatally Diagnosed Down Syndrome: Mothers Who Continued Their Pregnancies Evaluate Their Health Care Providers," American Journal of Obstetrics and Gynecology 192 (2005): 670-677.
