Sessions Introduces Prenatal Testing Legislation

Sessions Introduces Prenatal Testing Legislation

Washington, Mar 16 - Washington, DC - U.S. Congressman Pete Sessions (R-Dallas) today joined Senator Sam Brownback (R-Kansas), Senator Edward Kennedy (D-Massachusetts), and Congressman F. James Sensenbrenner, Jr. (R-Wisconsin) to introduce the Prenatally Diagnosed Conditions Awareness Act. The bill is designed to ensure that parents receive the best and most complete information possible regarding prenatally diagnosed conditions, including Down syndrome, Spina Bifida, Cystic Fibrosis, and others.

"As the parent of a child with Down syndrome, I have a first hand understanding of how confusing a diagnosis like this can be," said Sessions. "The goal of this bill is to make sure that parents are provided in-depth information and a solid support system at what can be a very confusing and frightening time for them.

"Technology has advanced exponentially in recent years. Our goal is to make sure that our ability to interpret results derived from that technology advances as well," stated Sessions.

The Prenatally Diagnosed Conditions Awareness Act ensures that we get the best information and support to expectant parents receiving a positive prenatal test. The information will include up-to-date, condition-specific scientific information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options. Referrals will also be provided to supportive services such as hotlines, websites, info clearinghouses, parent support networks and programs specific to Down syndrome and other prenatally diagnosed conditions.

"My son Alex, who has Down syndrome, is truly a blessing to my family," said Sessions. "Although my wife and I did not have prenatal testing, we were fortunate to have close friends with first hand experience with Down syndrome to rely upon as a resource when Alex was born.

"My hope for this legislation is that by providing all parents with information and support, we can show them that children with developmental disabilities - like my son, Alex - can live happy and productive lives," said Sessions.
The Prenatally Diagnosed Conditions Awareness Act also improves epidemiological understanding of prenatally diagnosed conditions. Currently, when we measure the occurrence of these conditions, we do not include cases identified through prenatal testing. By also collecting data on prenatally diagnosed occurrences of birth defects and developmental disabilities, we can better understand the conditions' epidemiology, assess causal factors where applicable, address the success of prevention campaigns, and initiate treatment.

Finally, this legislation includes provisions to ensure confidentiality when collecting data for public health studies; to develop guidelines for health care providers involved in prenatal testing; to authorize a GAO study of the effectiveness of existing health care and family support services for children with disabilities and their families; and to authorize $5 million in funding for each of the next five years for the improvements and services outlined in the bill.

"I thank Senator Brownback, Senator Kennedy, and Chairman Sensenbrenner for their leadership on this important legislation," said Sessions. "With this bill, we can not only help expectant parents understand the conditions they may face when they receive a positive test result, but we can also help the medical community to understand the occurrence of those conditions.

"This bill is a very important first step, and I look forward to combining the resources it provides with the great resources already available through the National Down Syndrome Society and the National Down Syndrome Congress to help make sure that parents have all the resources they need to assure quality of life for their children.

"I also look forward to continuing to work with my colleagues to extend the information and support services covered in this bill to parents of children diagnosed with these conditions at birth," Sessions concluded.

http://sessions.house.gov/News/DocumentSingle.aspx?DocumentID=7316