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NDSS and NDSC have issued the following joint position statement on a bill that is being introduced by Senator Sam Brownback of Kansas this week. We have not yet seen the final text of the bill, so we cannot comment on details at this time. However, because we have received calls about the bill and anticipate media coverage this week, we want you to know our initial thoughts. As soon as we receive the final text, we will provide you with our assessment of the proposed legislation. We will keep you posted as information becomes available. No action is needed at this point in time.
Joint Position Statement by the National Down Syndrome Congress and the National Down Syndrome Society on the Prenatal Testing Bill
The National Down Syndrome Congress and the National Down Syndrome Society understand that Senator Sam Brownback of Kansas plans to introduce a bill, tentatively titled the Prenatal Testing Bill, on March 9 that aims to improve access to information for parents who have a child diagnosed with Down syndrome. Following are some of the criteria on which we would judge such a bill:
Accurate, up-to-date information about Down syndrome is critical for parents who receive either a prenatal or postnatal diagnosis.
Greater education about Down syndrome is needed across the health care profession, including OB/GYNs, pediatricians, general practitioners, nurses, genetic counselors, speech/physical/occupational therapists, etc.
The National Down Syndrome Congress and the National Down Syndrome Society provide extensive information and support services to parents of children with Down syndrome. So while increased funding would enable dissemination to a wider audience, these programs should not be recreated.
Any data collection activities must respect the privacy of expectant parents, families who have a child with Down syndrome and individuals with Down syndrome.
In summary, such a bill should encourage a dialogue with health care professionals about delivering a Down syndrome diagnosis and supporting families affected by Down syndrome.
