Minnesota’s governor last week signed a bill to reinstate a practice that allows doctors to take blood samples from newborns and store them indefinitely unless their parents opt out, prompting concern from privacy advocates.
Beginning in the 1960s, the Minnesota Department of Health has screened babies soon after birth for various illnesses and disorders with the hope of quickly identifying the need for any medical intervention.
In 2012, the state legislature banned the retention of these samples, except for a set period of time, unless parental consent was obtained for the samples to be stored longer. This move came after a 2011 Supreme Court ruling, which ultimately led to the destruction of millions of previously stored blood samples.
Earlier this month, the Minnesota state House and Senate passed a bill to reinstate retention of the samples. Parents can now choose to opt out of having samples retained, according to the legislation, and a provision was included by lawmakers to ban the sale of the samples or test results. Gov. Mark Dayton (D) signed the bill into law last week, to the disappointment of privacy advocates.
“Governor Dayton clearly disregarded the rights of parents by handing over to the state the initial right of ownership of newborn DNA,” Twila Brase, president and cofounder of the Citizens’ Council for Health Freedom, said in a statement. “This law that Governor Dayton signed was never about newborn screening; it was never about the health and welfare of children. It was about denying parents first right of consent in the ownership of their child’s genetic blueprint and allowing the state to store newborn DNA and use it for research without parental consent. Governor Dayton did more than sign a bill; he crossed out the right of parents to protect their children and the privacy and property rights of newborn babies.”
The American Civil Liberties Union in Minnesota argued against the law’s opt-out stance, saying that “obtaining informed consent for the retention and later use after newborn screening for all purposes is not only possible but practical.”
The practice of newborn screening through blood samples and other means is not unique to Minnesota. According to the Centers for Disease Control and Prevention, all babies in the U.S. are checked for certain medical conditions soon after birth using this method.
But an article in the journal for the American Academy of Pediatrics several years ago noted that many states do not have policies regarding retention of these blood samples: The review found that four states claim the samples as their own property; five states allow parents to request the samples be destroyed after testing; and six states require parental consent if the sample were to be used for other research. Only one state prohibits the newborn blood samples from being used for other research, while 18 states have not addressed the issue of retaining the samples at all.
“Few state laws address the issues related to the retention and use of DBS in a comprehensive manner. Some states that retain DBS, and use them for research purposes, may be acting outside the scope of their legal authority,” the study authors wrote. “The maintenance of public trust in these important programs is paramount, yet state laws often are silent with respect to the education of parents about DBS and parental control over their retention and use.
“Although the appropriate role of parental decision making is subject to debate, the need for state regulatory bodies to develop a more comprehensive approach to these issues is clear. The appropriate balance between respecting the rights of newborns and their parents versus the potential for public good should be considered carefully. The lack of transparency on the part of states in retaining DBS may undermine the public’s trust in state newborn screening programs and the research enterprise,” the study concluded.
The Minnesota Department of Health said it stores these blood samples and test results for future testing of the child and population-based research. They can also be used to help identify a deceased or missing child.
More specifically, while the blood samples are dried as spots, they still contain biomarkers that can be used to identify elements like antibodies, DNA, environmental toxins and proteins, which can be then used to identify birth defects, cancer or chronic diseases. The department said these samples cannot be used for cloning or stem cell research.
While the screening can have direct benefits for the child tested, the health department said that it could also help families later down the line if used in research to develop new diagnostic, preventative or disease treatment methods.
The new retention practices will go into effect on August 1.
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