There are some parents who adopt, or become parents in a blended marriage. But for many, there still is that infinite joy of coming home from a hospital or birthing center with their very own newborn.
Except soon, the newborn might not be all theirs.
A plan developing now would give the federal government ownership of that infant’s DNA, obtained from blood samples taken at birth to screen for threatening diseases.
The warning comes from the Citizens’ Council for Health Freedom, which has fought for the privacy rights of parents and children for years.
“As things stand, in just over two months parents will lose their consent rights for the use of their newborn baby’s DNA for federally funded research, once the revised Common Rule goes into effect on July 19, 2018,” the organization said.
“That which the government holds, the government owns,” said Twila Brase, chief of the CCHF organization. “A child’s DNA held by the government could be sequenced, meaning a baby’s genetic code could be completely detailed and mapped – and then recorded in a state government database, used and shared.
“This is private information on America’s tiniest citizens, who will grow into adults stripped of their genetic privacy when they weren’t able to protect themselves.”
The change comes as a result of the final version of the “Federal Policy for the Protection of Human Subjects,” known as the Common Rule. CCHF worked in 2014 to secure privacy protections under the Newborn Screening Saves Lives Reauthorization Act, which required parental consent for the use of newborn DNA for federally funded research.
Barack Obama signed it, but it was under his administration that those protections later were deleted, since the plan was for the rule to take effect Jan. 19, 2017, the day before President Trump’s inauguration.
The rule canceled the 2014 protections.
The Trump administration “wisely put a hold” on the strategy, but that hold is to expire in July, unless it is renewed again, the organization explained.
“But regardless of any impending delay, parents should be concerned that the infant dried blood spots used for newborn screenings could be stored indefinitely or used for research, depending on the state of residency,” the organization explained.
“We know from our own research, research by others and through personal interactions that parents want to have control over whether their baby’s DNA is stored or used for research – or kept private and protected,” Brase explained. “The DNA of newborn citizens should not be used for research without parental consent, or later without their own consent as adults who were minors when their DNA was stored by state government without their consent.”
She said the government is not allowed to take the DNA of adults without consent, except for a few limited circumstances.
“Yet the DNA of many of the 4 million children born each year is collected and stored, available to be used, analyzed and shared without parental consent. Newborn DNA warehousing and research is a secret government ‘taking.’ Most parents do not realize what is taking place in the midst of their exhaustion, joy and vulnerability at the hospital – and they are not asked. But when they figure it out, some of them sue, which is exactly what attorney Philip Ellison did in Michigan – the fifth lawsuit so far,” she said.
While checking for certain disorders is important, the moms and dads are alarmed that state agencies are “creating large repositories of leftover identifiable newborn data, blood and DNA for medical and genetic research without further consent from the parents.”
CCHF previously helped 21 Minnesota families win a lawsuit that requiring all newborn DNA specimens in state custody be destroyed.
Then the legislature changed the law and the state began collecting data again.
Most recently, a lawsuit was launched against the state of Michigan.
The complaint against the Michigan Department of Health and Human Services, various doctors and others explains, “The Fourth Amendment of the United States Constitution guarantees the right of persons to be secure against unreasonable searches and seizures by the government, including the state of Michigan, its agencies, and those that work for in in cahoots with those agencies.”
While the state program to “seize” blood from newborns for testing against various diseases “is a noble public policy idea,” the method that the state as implemented “violates the United States Constitution,” the complaint contends.
The lawsuit seeks an order to stop the practice, destroy the data illegally collected and “return to the parents all blood samples and spots of infants which defendants have caused to be seized and stored indefinitely without informed consent.”