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PRESS RELEASE
For Immediate Release
Wednesday, April 30, 2003
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Citizens' Council on Health Care
1954 University Ave. W., Suite 8
St. Paul, MN 55104
http://www.cchconline.org ======================================
CONTACT:Twila Brase, R.N., President
PHONE: 651-646-8935
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MN HOUSE: ADDS PARENT CONSENT REQUIREMENT FOR NEWBORN GENETIC TESTING
St. Paul, Minnesota - Parents should should be able to refuse state
genetic testing of their children, says a Minnesota House Committee.
The House Ways and Means committee voted yesterday to attach an
amendment by Rep. Fran Bradley (R-Rochester) to the House Health and
Human Services omnibus bill (HF 437).
"This is a victory for parents and citizens. Genetic testing should
always be at the discretion and choice of individuals, not the
state," says Twila Brase, president of the Citizens' Council on
Health Care.
CCHC CONCERNS INITIATE AMENDMENT
The Bradley amendment, drafted with the assistance of Reps. Tim
Wilkin (R-Eagan) and Jim Abeler (R-Anoka) was the result of concerns
raised in testimony by Citizens' Council on Health Care on the
original language in the bill.
The original language written by the Minnesota Department of Health
(MDH), did not permit parents to object to genetic testing except on
the basis of religious tenets and practice. It authorized the
commissioner of health to add genetic tests without notice or public
comment. And all children with presumptive diagnoses were to be
placed on a state registry of congenital and heritable disorders
without parent consent.
The amendment requires parents to be given an array of options:
participating in the testing, not participating, or participating but
having their identifying information and blood specimens destroyed
within 24 months of the testing.
GENETIC RESEARCH
Brase remains concerned that parents will not fully understand that
state storage of blood specimens, may expose them and their children
to genetic research. In 2002, health officials received three
requests for access to the DBS of babies. Access was denied because
the department has yet to determine whether or how to permit access
to the specimens.
Although health officials last year recently received a $75,000
federal grant for development of a 'State Genetics Plan', Minnesota
currently has no specific law regarding use or dissemination of
infant blood specimens. The health department, which has historically
destroyed DBS after 5 years, decided in 1997 to keep them
permanently. The MDH reports that the dried blood spots of
approximately 350,000 individuals are currently in storage. This
figure will increase by approximately 70,000 a year, the state's
annual birth rate.
"Genetic and medical researchers view the DNA of babies as a huge
untapped resource for genetic data. Despite the potential benefits of
genetic testing, parents and citizens must always be given the right
to authorize or deny access to the private genetic details of their
lives," says Brase.
The Senate HHS omnibus bill, which includes the original provision on
newborn genetic testing, does not yet have the parent consent
amendment attached.
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CCHC is an independent non-profit free-market health care policy
organization located in St. Paul, Minnesota.
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LEGAL ADVICE. THE DECISION WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND
COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH
YOUR HEALTH CARE PROVIDER.