On the recordSeptember 10, 2002
on August 1, along with my colleague from Connecticut, Senator Dodd, introduced a bill designed to improve the Nation's current genetic newborn screening program. Our legislation would provide education grants for physicians and parents, as well as grants to States to improve follow-up and tracking of those children who receive a heelstick screening and receive a positive result for metabolic, genetic, infectious, and other congenital conditions that threaten their health and life. Each year, newborn screening identifies an estimated 3,000 babies with conditions that would otherwise have had dire consequences. But despite their clear importance, our newborn screening systems are fragmented. Quite simply, all children do not have access to the same genetic tests. Where a child is born and what tests are offered in that State is what determines the tests a newborn receives. In my home State of Ohio, we test for 12 disorders, while right across the border in Kentucky, they test for only four disorders and in Pennsylvania, they test for five. In Massachusetts, however, newborns are tested for 29 disorders. Furthermore, parents often are not sufficiently informed of the number of tests available in their state and what those tests can help accomplish.
Source
govinfo.gov




