PRESS RELEASES
For Immediate Release
Friday, May 08, 2009
Citizens
Petition Governor Pawlenty to
not Repeal
Genetic Privacy Rights
Ask
Governor to Veto Baby DNA Warehousing Bill
St. Paul/Minneapolis – Citizens' Council of Health Care (CCHC)
held
a press conference today to call on Governor Pawlenty to veto state
health department legislation that would repeal  genetic privacy rights and eliminate current
informed written parent consent requirements over the
storage, use, and sharing of newborn DNA. A tall stack of citizen
petitions from all across the state of Minnesota were delivered to
Governor Pawlenty’s office.
“The genetic privacy and DNA property rights of all future generations
are at stake with this legislation. If the health department’s
legislation to eliminate genetic privacy rights makes it to the
Governor’s desk, we call on Governor Pawlenty to protect the rights of
all citizens, including newborn citizens, with a veto,” said Twila
Brase, president of CCHC.
 Matt Brzica, father of four,
said, “We know today that DNA is the fundamental building block of
humans. How then can our legislators even begin to rationalize the
seizure of the stuff that makes us who we are without informed consent.”
“State government should not have first dibs to the DNA of citizens.
DNA is the property of the individual, not the property of State
government. Minnesota must retain the informed written consent
requirements that are in law today regarding DNA taken at birth from
infants,” Brase added.
Process & History:
Shortly after birth, hospital staff prick the heels of newborn babies.
Five spots of blood are collected on a special card. The card is sent
directly to the Minnesota Department of Health for genetic testing. At
present, the Department tests for 53 conditions. Prior to July 1, 1997,
the health department discarded the blood after testing. On July 1,
1997, through an executive decision, the health department begin
warehousing newborn blood spots and using and sharing them for genetic
research. No law permits storage or research and no parent consent has
been obtained.
Currently more than 819,000 children have their DNA warehoused
by the State and more than 1.5 million children’s genetic test
results are in the State genetic registry (since July 1, 1986). More
than 52,000 children have been subjects of genetic research.
Violation of Law:
On August 1, 2006, the Minnesota Genetic Privacy Law went into effect.
Informed written consent is required for government collection,
storage, use, and dissemination of a person’s genetic information. 
On March 23, 2007, an administrative law judged ruled that the
Minnesota Department of Health’s storage, use, and dissemination of
newborn blood without written informed parent consent is a violation of
the genetic privacy law. The Department’s appeal to the Chief
Administrative Law Judge was denied. On March 11, 2009, nine families
filed a lawsuit against the Department and the State of Minnesota.
Legislation to Overturn Law:
The Minnesota Department of Health has continued to violate the genetic
privacy law, and now seeks to overturn the law.
The Health Department’s proposed legislation, HF 1341 (Thissen)
and SF 1478 (Lynch), will exempt the Department’s collection,
storage, use and dissemination of newborn DNA from the
informed consent requirements of the state genetic privacy law. The
Department will be allowed to store, use and share newborn DNA for
research and other purposes. Parents will only have the right to object
and opt-out—if they can figure it out.
“When the nurse comes in, most parents think it’s just the hospital
doing a simple test on their baby. They have no idea that the blood is
sent to the State government, claimed as State government property,
stored and used for genetic research. Only with informed written
consent requirements will parents have the power to protect their
children’s genetic privacy.”
“All citizens, including newborn citizens, have a right to keep private
their genetic code and whatever secrets it may hold to their medical
future. The Fourth Amendment protects citizens from having their DNA
taken and analyzed by the government. We ask the Governor to recognize
and protect those rights,” said 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.
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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