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Letter: Screening bill clarification

Beth-Ann Bloom (Letters, June 3) is incorrect in her assertions about the newborn screening bill (HF 1341), which remains alive for the 2010 legislative session.

While the legislation makes changes to the state newborn genetic screening program, its primary purpose is to repeal current genetic privacy rights.

Today, the Minnesota Genetic Privacy Law requires government and others to obtain written informed consent for the collection, storage, use, and dissemination of genetic information.

House File 1341, authored by Rep. Paul Thissen (D-Mpls) and Sen. Ann Lynch (D-Rochester), would overturn the law, giving government officials and genetic researchers first dibs to newborn citizen DNA and genetic test results.

If passed, private genetic information could be collected, stored, used and shared for genetic research and other purposes without parent consent.

The Minnesota Department of Health has already stored the DNA of nearly 1 million children without consent, and 1.5 million children's test results are listed in the State genetic registry.

The DNA of more than 52,000 children has also been used for genetic research without parent consent. In 2007, an administrative law judge ruled the Department in violation of the State genetic privacy law.

Health officials refuse to comply, instead seeking to overturn the law. On March 11, 2009, nine families sued the Department.

This legislation has little to do with newborn genetic screening. Instead, it proposes to eliminate genetic privacy and give away the unique genetic codes of individual citizens to government and others.

Some very big players want baby DNA. State health officials, the Mayo Clinic and the March of Dimes testified in support of the bill.

To gain unfettered access to the DNA of private citizens, state government and private researchers claim that our DNA is public property. It's not.

DNA is private property.

Hopefully, Rep. Marsha Swails agrees.

Twila Brase, R.N., president

Citizens' Council on Health Care, St. Paul