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Press Room>Archive>HB 1672 - Texas Dried Blood Storage Legislation
Texas Babies Await Governor's Signature
(UNION, NJ, May 22, 2009) -- No one ever imagines their pregnancy or unborn child to be anything but normal and healthy. Since 1965, the state of Texas has been making sure that infants are protected from silent killers through universal newborn screening. Governor Rick Perry now has the opportunity to continue Texas’ tradition of excellence, further strengthen the State’s newborn screening program and protect blood spot samples that may be the key to cures for these conditions by placing his signature on HB1672.
“Our community has long experienced the devastation that can occur when states do not offer comprehensive, universal, mandated screening as is available in Texas. We also know the value of genetic information to our children’s future and the need to protect it from misuse,” says Dina M. Matos, executive director of CARES Foundation, an organization dedicated to improving the lives of individuals affected by Congenital Adrenal Hyperplasia (CAH), one of the life-threatening conditions included in Texas’ newborn screening panel.
“The provisions of this bill are vital to everything that Texas has achieved with its newborn screening program over the past 44 years. Requiring the disclosure to parents or guardians that newborn screening blood spot samples will be stored indefinitely by the State and could be used for research also is critical to ensuring that newborn screening testing procedures are accurate and up-to-date and bolstering important on-going work in the clinical research community. ”
According to National Newborn Screening & Genetics Resource Center state self-reported data, in 2008, the Texas newborn screening program detected 547 infants with potentially fatal diseases allowing them to receive life-saving early intervention. Twenty-nine of those babies were diagnosed with CAH.
“Without mandatory screening, however, these families probably would never even have had their infant tested,” cautions Kelly Leight, Founder of CARES Foundation, who after seeing the devastation wrought by states’ failure to screen, has fought tirelessly for state-mandated, comprehensive newborn screening including testing for CAH. In the case of autosomal recessive diseases like CAH, where both parents must be carriers to have an affected child, there is rarely any family history to indicate potential for inheritance. Because most families would have no reason to suspect CAH, they would see no reason to test their infant for this disease. For this reason the maintenance of Texas’ “opt-out” newborn screening program by HB 1672 is vital.
The collection and retention of blood spot samples for the purposes of calibrating newborn screening equipment, evaluating existing newborn screening tests to reduce the number of false results, developing new infant screening tests for heritable and congenital disorders, and other population-based health studies is very important as clinical research using these samples can save lives and may even be the key to a cure.
“We recognize the need to protect the genetic information of individuals and applaud the protections provided by the federal Genetic Information Non-discrimination Act (GINA). Even further protection is offered under federal regulations and university policies requiring Institutional Review Board (IRB) approval for research with dried blood spots,” concludes Matos.
For more information on CARES Foundation, CAH and newborn screening, please visit our website at http://www.caresfoundation.org or call 866-277-3737.
CARES Foundation Contact:
Dina Matos
Executive Director
Dina@caresfoundation.org
2414 Morris Ave., Suite 110
Union, NJ 07083
Phone: (908) 364-0272
Toll-free: (866) 227-3737
Fax: (908) 686-2019
URL: www.caresfoundation.org
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