By Brian Ojanpa
Free Press Staff Writer
MANKATO — Annie Brown says she’s no radical, and acknowledges that in some ways she may be overreacting.
“But I feel I have to make a stand,” the Mankato registered nurse says of a genetic privacy issue that nationwide has taken on a Big Brother-is-watching dynamic.
A month after Brown and husband Jared’s daughter Isabel was born last year, their pediatrician met with them to discuss a concern he had about the girl’s gene sample.
The couple wondered how the doctor even knew about their daughter’s genes because they’d never consented to genetic testing.
They learned U.S. newborns’ blood is routinely screened for genetic diseases, and that testing is mandated by the government, often without parents’ consent.
Moreover, in many states — including Florida, where Isabel was born — babies’ DNA is stored indefinitely in government labs.
Brown says she was appalled, not only because parental consent was being routinely bypassed but that a person’s genetic blueprint might be possessed by the government for perpetuity.
“As a nurse I’ve been trained that you have to be very cautious of informing people what will be done,” she says. “I felt very frustrated and concerned, and I feel it’s very important to bring up the debate.”
She’s not alone.
Government keeping of babies’ DNA without their parents’ knowledge or consent has resulted in a spate of lawsuits, including a nine-family class action against the state of Minnesota.
That suit alleges the Minnesota Department of Health collected, used and disseminated children’s blood and genetic information without written informed consent.
And that’s against the law, says Twila Brase, president of St. Paul-based Citizens’ Council on Health Care and an outspoken critic of DNA screening protocols.
“Parents and newborn citizens have been deprived of their lawful privacy and DNA property rights,” Brase says. “No government agency is above the law.”
Brase’s sentiment may sound strident, even paranoid, to some. Brown realizes that, but wants to make this clear:
She and others with concerns aren’t against the collection of genetic information per se. It’s the parental consent and government storage of that information, and all that may portend, that produces legal and ethical slippery slopes.
An example of that was revealed a few days ago in Texas, where a Texas Tribune investigation found that hundreds of newborn blood samples were sent without parental consent to a U.S. military laboratory to help the Armed Forces create a DNA database.
Brase called the act an egregious violation of individual rights, particularly because it involved infants incapable of providing consent.
“No adult would allow the government to store their DNA without consent, and no expectant parent should enter a hospital in fear of what will happen to their infant’s DNA,” she says.
A recent lawsuit settlement forced Texas officials to destroy 5.3 million infant blood samples it had been storing, without parental consent, since 2002.
Even though the samples aren’t labeled and can’t be traced to any individuals, the perception of some affected parents is that the state went behind their backs, thus eroding trust in the DNA privacy system.
Minnesota has a genetic privacy law that bans genetic collection, storage and dissemination without parental consent, but Brase contends that statute isn’t being followed.
Minnesota also allows parents to have their child’s blood sample destroyed upon request.
University of Pennsylvania bioethicist Art Caplan told CNN he understands why states don’t first ask permission to screen babies for genetic diseases — he says the state has an overriding interest in protecting them — but questions the storage of DNA for long periods of time.
“If it’s anonymous, then I don’t care. But if you keep names attached to those samples, that makes me nervous,” he says.
One specific concern Brown and others have is the attachment of a child’s genetic information to an insurance company’s files.
They fear DNA test results could be used to pressure parents not to have more children, and to possibly deny health insurance for the child tested as well as future children.
But the key crux of the debate comes back to the issue of full disclosure.
Brase, citing a recent study on parent attitudes regarding storage and use of newborn DNA, said that although many parents may be willing to permit it and participate in genetic research, “it’s very clear that most parents are not willing unless they have first been asked for permission.”
Brian Whited, medical director for Immanuel St. Joseph’s Hospital in Mankato, says expectant parents are routinely apprised of the mandated DNA screening procedure through informational brochures and face-to-face notifications from nurses.
“But how much of it registers at the time is hard to know,” he says. “I’d be surprised if nurses went into a lot of all the details on this. I’d be remiss to say that absolutely everybody gets to know all they need to know about this.”
Minnesota law allows for parents to opt out of the screening, but Whited says very few do so.
