Patient privacy for some of Indiana's youngest citizens—and the fight for the protection of baby DNA nationwide—took a blow this week, as the Indiana Court of Appeals ruled against baby "A.B. Doe," her parents and other families they were representing.
Doe and her parents filed suit against the Indiana State Health Commissioner, the director of the Indiana State Department of Health (ISDH) Genomics and Newborn Screening Program and the Indiana State Department of Health, stating that the baby's dried blood spot taken at the time of her birth was stored without permission.
Judge Heather A. Welch instead ruled in favor of the plaintiffs, Dr. Jerome Adams, Indiana State Health commissioner, and Victoria Buchanan, director of the ISDH Genomics and Newborn Screening Program, stating that Doe "had not sustained, nor was she in immediate danger of sustaining, a direct injury as a result of the storage of her dried blood spot sample," according to court documents.
Citizens' Council for Health Freedom (CCHF), however, takes issue with the decision, stating that, at the core, a breach of constitutional rights is an injury.
"We disagree with the court's ruling that the storage of newborn bloodspots is 'reasonable' and therefore not an unreasonable search and seizure under the Fourth Amendment," said Twila Brase, co-founder and president of CCHF. "This is the child's DNA. Its value for newborn genetic screening disappears after six months and all that's left is the DNA. The long-term storage of baby DNA by state government is not reasonable. It's a constitutional violation."
Currently, Brase added, Indiana is holding more than 666 banker boxes of newborn DNA—the blood spots collected from newborn screening tests since 1991 and the DNA of more than 2.5 million citizens.
"The government cannot lay claim to the DNA of adults the way they have laid claim to the DNA of every child who will become an adult," said Brase. "It would be unconstitutional. There was no parental consent for this storage, and no consent from those who were children and now are adults. And despite claims that the Indiana Department of Health has not used these samples for research, the Department itself admits to using them for 'test development,' which is indeed research."
Brase went on to say that the Court of Appeals in this case did not satisfactorily address the constitutionality of the storage of newborn DNA. When the case began in September 2014, the parents of baby Doe claimed their Fourth, Fifth and Fourteenth Amendment rights had been violated. But the Court found that the sampling and storage of samples does not violate the baby's Fourth Amendment regarding search and seizure.
"Simply put, the court is wrong about the constitutionality of this government taking," Brase continued, "because once the testing was concluded, the DNA should have been destroyed rather than stored indefinitely. Not to dispose of it is to lay ownership claims to the newborn citizens' DNA. The Court is wrongly relying on parents and former minors to: 1) stumble upon a news story from two years ago, 2) realize the storage happened to them, 3) understand English, 4) have access to the Internet and a phone, and 5) find the form and spend the time to opt out.
"This is an issue that should be of great concern to all parents," she concluded. "The right course of action is immediate destruction of the stored DNA—not only in Indiana, but in every state with long-term storage."
As background for the case, when baby Doe was born in 2006, a small amount of blood was collected from her, pursuant to Indiana's newborn screening program. Indiana code requires that hospitals take a blood sample from every infant born under their care, usually by a heel-stick test before he or she leaves the hospital or within one week of birth, if born outside of a hospital. The blood is collected in five circles on a newborn screen card—a "DBS sample"—and transported to a laboratory for testing. The laboratory performs the screen by punching out small pieces from the sample. If the test results indicate anything of concern, the lab contacts the newborn's doctor.
Despite no law to authorize storage, from approximately 1991 to June 2013, ISDH retained and stored that portion of the newborn screen card that contained the blood sample taken from each infant, Brase said. In June 2013, ISDH changed its storage and retention policies to require parent consent for storage and research, but decided to retain the previous 23 years of newborn dried blood spots indefinitely.
CCHF, a patient-centered national health freedom organization existing protect health care choices, individualized patient care, and medical and genetic privacy rights, discovered the "baby DNA" issue in 2003 and was instrumental in a similar case in its home state of Minnesota and another case filed in Texas. In 2009, a parent lawsuit orchestrated by CCHF was filed. In 2011, the Minnesota Supreme Court ruled in favor of parental consent. In 2012, the legislature added consent requirements to the newborn screening law, and in January 2014, more than 1 million DNA samples were destroyed as a result of the court case, which pitted 21 Minnesota families against the Minnesota state health department.
"What we find is that most parents have no idea their baby's genetic information—the blueprint of who they are—is being stored and used by the government for research and other purposes," Brase said. "When parents find out, most are surprised. Many are upset. And when asked, the majority of parents are unwilling to have their child's DNA stored and used for research without consent.
"Baby Hoosiers have a constitutional right to not have their DNA stored by state government, she added. "The Indiana baby DNA warehouse should be dismantled."
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