MINNEAPOLIS, May 15, 2008 – A bill supported by the MMA to protect a newborn screening program passed the House and Senate Thursday.

Before passing, the bill was amended to require providers to note in the medical record that the parents were told they could opt out of the program and were given a chance to ask questions.

It was unclear Thursday afternoon whether the governor would sign the bill.

The MMA strongly supports the newborn screening program that saves infants from terrible diseases and death. Minnesota is a leader in the area of screening newborns for genetic disorders.

The Minnesota Health Department is 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.

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.

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.