MINNEAPOLIS, May 8, 2008 - The MMA is urging lawmakers to pass a bill that would protect a newborn screening program that saves infants every year from terrible diseases and death.

Minnesota is a leader in the area of screening newborns for genetic disorders. Each year the state screens about 72,000 infants and catches about 70 of these rare disorders. About one in 800 babies are born with a hidden, rare disorder that can be found by newborn screening, according to the Minnesota Department of Health.

The Minnesota Health Department has been in the process of trying to pass a bill (S.F. 3138) that would  ensure the program does not conflict with a genetic privacy law that was passed in 2006. The bill would also further enhance parental rights, including the opportunity to opt out of any public health studies or research conducted on the residual dried blood spots.

Now some opponents of the program are trying to use the need to pass S.F. 3138 as an opportunity to weaken and undercut the program by spreading misinformation. Opponents have been whipping up fears that the program violates parental rights and that the genetic information collected during the test will somehow be misused in the future. The blood spot samples are kept so they can be used to improve the tests and develop new screenings. However, all information connecting them to a person is stripped from them before they are used for research

In fact, parents have always had the ability to opt out of having their baby tested. In 2003, the Minnesota Legislature enhanced parental rights allowing parents several opt out choices. One is not to have their baby tested at all. Another is to have their baby tested, but to have the test results and dried blood spot destroyed. Whenever a parent requests to opt out, the Department immediately responds in writing confirming that the parents' wishes are honored.

The MMA supports the program and believes it strikes the correct balance between public health and protecting privacy rights because all identifying information is removed from samples used for research.

One need not look any further than Paul and Sue Rosenau, the recent winners of the $180 million Powerball jackpot, to see the value of the program. The couple has been involved in trying to get a test for Krabbe disease, a nervous system disorder, to be part of routine newborn screenings, after their 2-year-old granddaughter died of the disease five years ago.