(LifeSite) Most new parents have no idea that by the time they leave the hospital with their newborn, a sample of their child’s blood has already been sent to the state government. Depending on the state, the government may store and use their child’s blood for anywhere from months to indefinitely – and not only is it legal, it’s actually mandated by law.
Each American state has its own newborn screening program through which healthcare professionals who deliver babies are required to collect a blood sample in order to test for rare genetic or metabolic diseases. Only in two states, Maryland and Minnesota, are healthcare practitioners even required to obtain parental consent. Wyoming law technically requires parents’ “written consent,” but is worded vaguely enough that in practice, it amounts to a system that must be opted-out of rather than opted into. Utah allows a “religious exemption” that mandates the parents report their religion to the state – and it must be “a specified, well recognized, religious organization whose teachings are contrary to the testing required by Utah law for each newborn infant.”
The issue of state governments harvesting the DNA of almost every newborn has received sporadic attention from health-freedom advocates over the years.
“Within 48 hours after the birth of a baby, the heel is pricked, newborn blood is squeezed onto a card with special filter paper, and the card is sent for analysis to the State government laboratory or the laboratory under contract with the State Department of Health,” the Citizens’ Council for Health Freedom (CCHF) explained in 2007. “At least 4.0 million newborn babies are tested every year in the United States.”
This mandatory and little-known newborn blood collection program is sometimes called a “PKU test,” because phenylketonuria (PKU) is one of the conditions for which babies’ blood is screened, or the “heel prick,” which is how the blood is taken. Each state tests for at least 29 conditions. California tests for 80.
Once those tests are complete, “California law allows for the use of the remaining blood spots for studies approved by the California Department of Public Health,” a document produced by the state’s health department says.
And “California law allows the NBS Program to use or provide newborn screening specimens for department-approved studies of disease in women and children, such as research related to identifying and preventing diseases like birth defects or exposure to toxins or infections.”
The U.S. Centers for Disease Control (CDC) even has a “Newborn Screening Quality Assurance Program” that was developed “to help state health departments and their laboratories maintain and enhance the quality of test results,” a website created by the U.S. Department of Health and Human Services boasts. “It has been the only comprehensive source of essential quality assurance services for dried-blood-spot testing for more than 33 years.”
Most parents ‘don’t even know their child’s DNA has been stored’
“According to a 2009 study published in the journal Public Health Genomics, nearly every child born in the United States is screened. However, not all parents know the screening took place,” noted a 2014 U.S. News & World Report article by CCHF president Twila Brase. “Birth is a stressful time. Some parents tell researchers they can’t remember it happened. Others say they were in a ‘fog.’”
Brase continued:
In Texas, the Department of State Health Services provided anonymous newborn blood specimens to the U.S. Armed Forces DNA Identification Laboratory for the creation of a forensics database. In 19 states, blood samples taken from newborns are stored from 1 to 23 years, and in eight states they are kept indefinitely, according to the 2009 study led by Beth Tarini, an assistant professor of pediatrics with the University of Michigan Health System.”
Should a baby’s birth signal the automatic transferal of DNA rights from a newborn to the government with no parental say?
The Citizens’ Council for Health Freedom, which discovered this issue in 2003, firmly believes such a transfer is a fundamental violation of privacy rights. While some states allow parents to opt out of government storage and use, this is not parental consent. It’s dissent. It gives government first dibs to the baby’s DNA. Consent requires a form with a signature before the sample can be stored or used for research. Surrounded by the ‘fog’ of a birth, most parents won’t opt out because they don’t even know their child’s DNA has been stored.
‘Warrantless searches and seizures’: Police access newborn blood ‘without having to show a court probable cause’
In 2022, Kaiser Health News wrote a detailed article about the ethical and privacy issues surrounding the nationwide mandated collection of newborn blood.
“To those who might argue that parents’ privacy concerns are overblown, a recent lawsuit in New Jersey raises troubling questions,” the article warned.
It continued:
In a public records lawsuit, the New Jersey Office of the Public Defender and the New Jersey Monitor, a nonprofit news site, charge that the state police used a subpoena to obtain an infant blood spot of a child who is now 9 years old from the state’s newborn screening laboratory. The lawsuit says a DNA analysis was conducted on the blood spot so evidence could be gathered against the child’s father, who was being represented by the public defender’s office, in connection with a sexual assault committed in 1996. The effort allowed police to get the DNA information without having to show a court probable cause, the suit alleges.
The lawsuit seeks to find out how often in the past five years New Jersey law enforcement agencies have used the newborn screening lab as a tool in investigations and subjected defendants to “warrantless searches and seizures.”
… A recent Texas Law Review article found that more than a quarter of states lack policies on law enforcement access to newborn blood spot samples and related information and that nearly a third may allow access in certain circumstances.
That Texas Law Review article suggests that “law enforcement interest” in babies’ DNA could deter parents from wanting to participate in newborn screening programs which “serve the public health.”
“Law enforcement interest must not be permitted to undermine public trust in these programs or to dissuade new parents from participating in them,” it says, while also arguing that “state policymakers should adopt clear policies rejecting law enforcement use of newborn screening resources to develop investigative leads.”
In practice, limited options for parents
For parents who wish to avoid the state taking their child’s DNA, options greatly vary by state. Most states do have a way to refuse the test. Some have a form parents can use to request their child’s blood sample be destroyed after it’s tested, rather than allow it to be stored by the state.
However, as the COVID-19 years demonstrated, the “right” on paper to refuse something is very different from actually having and being able to exercise that right. For parents who do know about the newborn blood collection program and object to their child’s DNA being taken by the government, options are limited.
Perhaps these parents know their babies’ odds of having an extremely rare disease are extremely rare. Perhaps they would rather have the same exact blood test done at a private lab not affiliated with the state. But such parents also would have to consider modern medicine’s general distaste for intervention-hesitant parents, and may simply decide it’s not worth it to “risk” refusing the DNA harvest.
Anecdotal accounts from parents indicate it’s not even standard practice to advise or educate parents on their babies’ DNA collection, or even let them know that blood was taken, in most U.S. hospitals, so parents would have to bring it up with medical staff and proactively attempt to refuse – a difficult conversation for exhausted parents who just want to take their baby home from the hospital without much fuss.
Brase’s 2014 US News and World Report article did note that parents in Minnesota and Texas successfully sued after discovering the states stored and used babies’ blood spots after screenings without their consent.
