PRESS RELEASES
For Immediate Release
Wednesday, May 05, 2009
Baby
DNA Bill:
Will the MN
House Vote to Repeal
Genetic Privacy Rights at Birth?
House Vote on HF
1760 Expected Today
Saint Paul/May 5, 2009 - The Minnesota House is expected to
vote on a bill that will limit the ability of parents to protect their
child's genetic privacy. The bill exempts newborns from the strong
protections of the Minnesota Genetic Privacy Law (M.S. 13.386), and
eliminates informed written parent consent rights now in law. Today, by
law, government may not collect, store, use, or disseminate the genetic
information of citizens without informed written consent. That
includes newborn citizens.
HF 1760, authored by Rep. Paul Thissen (D-Mpls), excludes
newborn citizens, their genetic test results and their
DNA from all consent requirements.
"House File 1760 is a violation of civil rights. It gives government
first dibs to newborn DNA and genetic test results. The DNA and test
results become State government property unless the parent knows enough
to object," said Twila Brase, president of CCHC.
"Most parents, in the midst of post-delivery exhaustion and excitement,
think it's just the hospital coming to take blood from their baby's
heel for a simple test. They have no idea that it's essentially the
government that's taking it, and they have no idea that the government
will keep what they take and what they learn," she added.
On March 23, 2007, an administrative law judge ruled that the Minnesota
Department of Health was violating the Minnesota Genetic Privacy Law.
Judge Barbara Nielsen said they could collect the blood solely for the
purpose of testing, not storage and research. The Department appealed
to the Chief ALJ, and lost. The Department has continued to violate the
law by collecting more blood than they need and storing, using and
disseminating newborn DNA and genetic test results for research without
written informed parent consent.
On March 11, 2009, nine families sued the Department of Health under
the Government Data Practices Act.
"House File 1760 would reward the health department's illegal behavior
by eliminating the law they have refused to follow. It would also
eliminate the ability of parents to ever sue again for violations of
the Government Data Practices Act," said Brase.
"Is the Minnesota House willing to eliminate informed written parent
consent requirements and genetic privacy rights at birth? We hope not.
We hope state legislators will stand firm in their oath to protect the
Fourth Amendment rights of the people, including the genetic privacy
rights of newborn citizens," Brase concluded.
For More Information
FMI:
Twila Brase, RN, PHN
President
651-646-8935 office
- CCHC -
Citizens' Council on Health Care supports
freedom for patients and doctors, medical
innovation, and the right to a confidential patient-doctor
relationship.
Citizens' Council on Health Care is a non-profit, independent health care policy organization that supports free-market ideas in health care.
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