[Congressional Record (Bound Edition), Volume 148 (2002), Part 12]
[Senate]
[Page 16498]
[From the U.S. Government Publishing Office, www.gpo.gov]




            IMPROVING THE GENETIC NEWBORN SCREENING PROGRAM

  Mr. DeWINE. Mr. President, 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. Physicians may not know to educate parents, or physicians 
may talk to parents too late in the birthing process for it to make a 
difference. Also, State health departments may not follow-up adequately 
with the parents of a child who receives a positive test result, and 
health departments may not have the capacity to effectively record or 
track a large number of positive results.
  The bill we are introducing today would go a long way toward 
streamlining the current newborn screening system by offering states 
grants to accomplish the following: build and expand existing 
procedures and systems to report test results to individuals and 
families, and primary care physicians and subspecialties; coordinate 
ongoing follow-up treatment with individuals, families, and primary 
care physicians after a newborn receives an indication of the presence 
of a disorder on a screening test; ensure seamless integration of 
confirmatory testing, tertiary care, genetic services, including 
counseling, and access to developing therapies by participation in 
approved clinical trials involving the primary health care of the 
infant; and analyze collected data to identify populations at high 
risk, examine and respond to health concerns, recognize and address 
relevant environmental, behavioral, socioeconomic, demographic, and 
other factors.
  This bill is a good start toward ensuring that all newborns receive 
equal access to genetic tests and that their follow-up care, if needed, 
is available and coordinated. The importance of these screenings cannot 
be overstated. It can mean the difference between life and death for a 
newborn. And that, is something we must address.
  I ask my colleagues for their support.

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