March 10, 2010, was just another morning at work for Stacy Nugent of Blaine. Then the life-shattering phone call came. On the line was her distraught, screaming husband. The couple’s spunky, healthy 2-year-old daughter, Paige, had stopped breathing. The little girl was rushed to the hospital, but it was too late.
Four years later, the couple not only lacks answers about Paige’s sudden death from a SIDS-like condition affecting slightly older children, but also about the risks that their second daughter, now a toddler, may face. A key reason: the tiny blood sample taken from Paige as part of the state’s newborn screening program was destroyed one day before the family’s medical team requested this valuable infant health snapshot to probe the medical risks the couple’s children may face.
Nugent was heartbroken but unbowed. While she’ll never know what answers Paige’s blood spot may have held, Nugent is one of a number of Minnesota moms campaigning to make sure other families won’t lose access to this important medical information in the future. Lawmakers are weighing bills that would protect blood spots and ensure that they can be used to develop more lifesaving screening tests for infant pediatric diseases. They ought to heed these mothers’ pleas instead of anti-government “health freedom” lobbyists’ objections and swiftly pass this common-sense legislation.
“We should do everything we can to protect our families,’’ Nugent said. “You never know when you’re going to need something like the blood spot card.’’
Legislative action is needed in the wake of a controversial 2011 Minnesota Supreme Court ruling on a lawsuit challenging the newborn screening program on medical privacy grounds. The court ruled that health officials did not have express authority for the program’s operations outside of the actual screening tests, meaning the blood spots could no longer even be used for quality assurance or test calibrations, for example.
In 2012, the Legislature established short, arbitrary time frames for the use of the blood samples, which are now destroyed after 71 days for healthy infants. Shortsightedly, they also excluded new test development from the program’s scope. This year, the Health Department began destroying its archived blood spots.
The sensible changes called for in the current legislation would help rebuild this lifesaving program while striking a balance with privacy concerns. Key changes in the bill include designating new test development as part of the program’s operations, which would play a critical role in going beyond the 50-plus conditions now screened for. It also would establish broader authority for long-term storage, with parents opting out instead of opting in. The change is expected to bolster participation in the program, which would help ensure that the information is there in case families like Nugent’s need it.
Actually reading the proposed bill contradicts claims by “health freedom” advocate Twila Brase that it would “strip” parents of their right to consent to blood spot storage and use. Brase, who also urges people to go without health insurance and believes Medicare is “wholesale tyranny,’’ was traveling and unavailable for an interview.
The bill does not take away parents’ options to opt out of the screening or blood spot storage. It explicitly states that parents and legal guardians are told about both, as well as their right to opt out of either (there’s no time limit for opting out of the storage program). Blood spot usage is also limited to the newborn screening program, while outside medical researchers wanting to study them would have to obtain written informed consent from parents or legal guardians. People 18 and older would have the right to revoke participation in the program even if their parents consented.
Privacy advocates are typically unable to say specifically how people have been harmed in the past by newborn screening. Future harm is generally limited to hypotheticals about “DNA ownership” by the government or police potentially accessing the information to incriminate someone, something that legislative testimony suggested can’t be done. The program also doesn’t do genetic sequencing, so there’s no DNA database making it attractive for law enforcement use, either.
The program’s benefits, in contrast, are real. It’s credited with saving more than 5,000 children’s lives since its inception. Changes in the legislation would allow it to save even more.