Minnesota Department of Health Continues to Store Baby DNA without Required Parent Consent; Violates Genetic Privacy Law…and Governor’s Veto
CCHC calls on Governor Pawlenty to require compliance with state law
St. Paul/Minneapolis – In a press conference held today, concerned parents and the Citizens’ Council on Health Care (CCHC) called on Governor Tim Pawlenty to require his Commissioner of Health to cease and desist the warehousing of newborn blood and baby DNA without informed, written parent consent.
“Despite Governor Pawlenty’s veto of the health department’s DNA warehousing bill last legislative session…we have confirmed that the Minnesota Department of Health is continuing to warehouse baby DNA without parent consent. This is a direct violation of the genetic privacy and DNA property rights of parents and children,” said Twila Brase, president of CCHC.
DeEtta Moos, mother of four children, said, “Last session, there was an attempt to undercut Judge Neilson's ruling, but thanks to Governor Pawlenty's veto, the Minnesota Genetic Privacy Law still demands the requirement of parental consent for storage of blood and any purposes beyond the initial testing.”
Ryan Sibinski, expectant father of twins, expressed his disappointment saying, “My wife and I are acutely aware that storage of newborn DNA is still being done illegally by the MN Department of Health. We thought the Governor’s veto was supposed to solve this, but we have now discovered that the storage continues.”
Mr. Sibinski continued, “In two months or less, our babies will be born. I request here today that the Department of Health make sure that I am clearly asked to consent to the storage, use, and sharing of my children’s blood and DNA. This is my legal right under the law.”
Attorney Nathan Hansen, who has been attempting to obtain public documents regarding the transfer and use of newborn DNA for research studies, said, “No excuse has been given by the Department for this information not to be handed over.”
August 1, 2006 – Minnesota Genetic Privacy Law (M.S. 13.386) becomes effective. Informed written consent required for collection, storage, use and dissemination of genetic information by government and others.
January 23, 2007 – At request of concerned citizens, a public hearing was held on the health department’s proposed revision to the newborn screening rule.
March 23, 2007 – Administrative Law Judge (ALJ) Barbara Neilsen rules that the Minnesota Department of Health (MDH) is violating the 2006 state genetic privacy law’s informed written consent requirements for storage, use and dissemination.
July 3, 2007 – Chief Administrative Law Judge Raymond R. Krause denies Health Commissioner Dianne Mandernach’s appeal of the Neilsen ruling.
August 29, 2007 – Commissioner Mandernach withdraws the proposed revision to the newborn screening rule.
February 25, 2008 – Legislation introduced in the Minnesota legislature to exempt the newborn screening program (collection, storage, use, and dissemination) from the genetic privacy law’s requirements for informed, written consent.
May 19, 2008 – Governor vetoes S.F. 3138, prohibiting an exemption to the genetic privacy law’s consent requirements. He mentions ALJ ruling in his veto letter.
November 18, 2008 – David Orren, MDH Chief Legal Counsel, confirms to CCHC that MDH continues to store newborn blood without consent.
Ms. Brase called on Governor Pawlenty to act, saying, “We call on Governor Pawlenty to take immediate steps to assure the public that he supports the rule of law, and holds his administration accountable to follow the law. Let me suggest that he issue a statement today guaranteeing the health department’s compliance with the written informed consent requirements of the genetic privacy law. He could decree that no newborn blood be warehoused, used for research, or shared with others without informed written parent consent. He could order the health department to release public documents in compliance with the Government Data Practices Act. And he could also promise to dismantle the state’s DNA warehouse, protecting the genetic privacy rights of the more than 780,000 children whose DNA has been claimed by state government and warehoused without consent.”
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