October is National Down Syndrome Awareness Month. A new Kentucky law serves to raise that awareness by providing new and expectant parents resources when they receive a test result for Down syndrome.
The law, known as the Down Syndrome Information Act, took effect at the end of June. Six months earlier it could have helped a Kentucky mom.
The Huffington Post’s report on new prenatal tests for Down syndrome featured a Kentucky mom who received her test results last winter … and then nothing else. As she described it, “Nobody offered anything. Nobody told me about any resources. … I had to do all of that on my own.”
The new Kentucky law should prevent this mom’s experience from happening again.
The law requires that when any health care provider delivers a test result for Down syndrome, they are to provide resources made available through the Department of Public Health.
Senator Julie Denton, Republican Chair of the Senate Health & Welfare Committee, introduced the bill and it passed unanimously through the Senate. It received the support of House Health & Welfare Committee Chair, Democrat Representative Tom Burch, and passed unanimously in the House, as well.
Governor Steve Beshear made a point of signing the bill into law in time for World Down Syndrome Day, held each year on March 21–the numerical date 3/21 representing three copies of the 21st Chromosome, the cause of Down syndrome.
The Department of Public Health has launched a webpage to implement the law. Medical guidelines have long recognized the value of connecting new and expectant parents to local parent support groups. The webpage lists the parent support organizations that serve across the Commonwealth.
The webpage also provides links to the resources based at the University of Kentucky’s National Center for Prenatal & Postnatal Down Syndrome Resources.
The National Center has an on-line training program on how to deliver a diagnosis and provides written materials that have been identified by
expectant mothers as the type of information they want to receive with a diagnosis. The National Center’s resources are approved by the National Society of Genetic Counselors, and the American College of Medical Genetics and Genomics’ most recent statement on prenatal testing identifies them as the resources to be provided with a test result.
The Down Syndrome Information Act comes at a time when that one Kentucky mom’s experience of receiving a test result will become more common than ever.
While births have leveled off nationally, there has been an increase in the number of births to women over the age of 30. The chance for having a child with Down syndrome increases with the age of the mother. Further, prenatal testing advances have resulted in all expectant mothers being offered prenatal testing for Down syndrome. Therefore, there will be more women expecting a child with Down syndrome and more will have the chance to find out earlier than ever.
Fortunately, the Down Syndrome Information Act is an example of bipartisan common ground that utilizes resources based right here in Kentucky. With the new law, doctors, nurses, genetic counselors, and midwives have available the resources their patients need to receive with a Down syndrome test result.
By complying with the law, mothers will no longer have to seek out information on their own from potentially unreliable sources. Instead, when delivering a test result for Down syndrome, Kentucky’s health providers will be providing the information and support resources recognized by professional medical organizations and required by Kentucky Law.
Mark W. Leach is a member of Stites & Harbison and its health care practice group. He is the board president for Down Syndrome of Louisville. Leach also serves as a bioethics specialist for the National Center for Prenatal & Postnatal Down Syndrome Resources and he has a daughter who has Down syndrome.
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