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Dec 10, 2008 6:45 pm US/Central
Many Parents Clueless About Newborn Genetic Tests
(WCCO)
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Parents have had the right to opt out and object to genetic testing, but a law that went into effect August 2006 also requires parents be informed and give their written consent for the Minnesota Department of Health to store that blood.
CBS
Each year blood samples are taken from thousands of newborns to screen for more than 50 medical conditions.
Some of that blood goes to the Minnesota Department of Health where it's stored and used for research -- something few parents or expectant parents know about.
A local advocacy group said that's against the law because parents are not giving the Government permission to use it.
Parents have had the right to opt out and object to genetic testing, but a law that went into effect August 2006 also requires parents be informed and give their written consent for the Minnesota Department of Health to store that blood and share it with others.
"Before they prick the heel of that baby, they have to understand that it's the Government pricking the heel," said Twila Brase is the President of Citizens' Council on Health Care. "Today 200 children are having their rights violated because (the government is) not following the law."
The group worries that parents are being kept in the dark.
"Unless they know it … they don't know they have the right to object to the testing or to the storage," said Brase.
The five spot blood test, as it's called by some, is also being used for research.
"We know that the University of Minnesota and the Mayo have gotten some of the blood spots. We suspect the Health Department have done additional studies," said Brase.
The MN Health Department issued this statement: We continue to work with stakeholders on the very complex questions surrounding the long-term storage and use of dried blood spots.
The advocacy group wants more. They want parents of newborns to be given consent forms and a clear explanation of their options.
One father-to-be said he'd like more information.
"We do not want to feel misinformed after we've made our decision and we don't want to experience any long-term, negative consequences as a result of being misinformed," said Ryan Sibinski.
The advocacy group is meeting with Governor Tim Pawlenty at the end of the month to discuss whether the health department will change its policy.
(© MMX, CBS Broadcasting Inc. All Rights Reserved.)
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