PRESS RELEASES
For Immediate Release
Tuesday, March 24, 2009
Genetic
Privacy Rights to Be Eliminated?
House Committee Votes to Exempt
Newborn Citizens
from Minnesota's Genetic Privacy Law
Minneapolis/Saint Paul - Citizens' Council on Health Care has
denounced last night's House committee vote to undo the State Genetic
Privacy Law.
"Last night's vote was a vote to begin unraveling the genetic privacy
rights of all Minnesotans," says Twila Brase, president of CCHC, who
testified at the hearing. "If this bill passes, informed written
consent rights will no longer be required before the State takes,
stores, and uses the genetic information and DNA of newborn citizens."
The bill:
- eliminates genetic privacy rights for newborn citizens and their
parents
- eliminates written informed parent consent requirements from
government storage, use, and sharing of newborn genetic information,
including newborn DNA
- eliminates the right of parents to sue for legal redress of State
violations of genetic privacy rights
- excludes newborn DNA from the definition of "genetic information"
allowing it to be extracted from newborn blood and analyzed without
parent consent.
"The Department's actions will hurt children. Last year, 89 parents
chose not to have their children tested at birth. The parents who talk
to us
about their decision to opt out of testing say they wanted the testing
but they didn't want
the government to have their baby's blood and DNA," say Brase.
There are currently more than 819,000 children in the Department's baby
DNA repository. The Mayo Clinic, which has a testing contract with the
Department also has a baby DNA repository for research. In addition,
more than 1.5 million children's genetic test results are stored in a
Department database. According to statistics on the Department's
website, more than 52,000 children have been subjects of genetic
research, most without consent.
In 2007, the Chief Administrative Law Judge ruled that the Minnesota
Department of Health is in violation of the 2006 Minnesota Genetic
Privacy Law (M.S. 13.386) regarding its practice to store, use, and
disseminate newborn blood to researchers without written informed
consent from parents. On March 11, 2009, nine families sued the
Department in Hennepin County Court.
"The Minnesota Department of Health wants to legalize their illegal
activities. This bill will allow them to claim newborn DNA as State
government property unless parents in the midst of post-labor and
delivery exhaustion know enough to say no. This is a violation of the
parent and newborn rights," says Brase.
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.
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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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