Is Every Baby in the United States Having Dna Gathered
Anne Brown worries that someone could gain admission to the DNA sample from her daughter Isabel with Isabel's name attached.
STORY HIGHLIGHTS
- Genetic testing for newborns started in the 1960s
- Specimens are often given to outside researchers
- Scientists have said the collection of Deoxyribonucleic acid samples is a "aureate mine" for doing research
This Empowered Patient cavalcade was originally published on February 4, 2010.
(CNN) -- When Annie Brown's daughter, Isabel, was a month old, her pediatrician asked Brownish and her husband to sit down because he had some bad news to tell them: Isabel carried a gene that put her at risk for cystic fibrosis.
While grateful to take the information -- Isabel received farther testing and she doesn't have the affliction -- the Mankato, Minnesota, couple wondered how the doctor knew about Isabel'south genes in the first identify. Later all, they'd never consented to genetic testing.
It'southward simple, the pediatrician answered: Newborn babies in the United States are routinely screened for a panel of genetic diseases. Since the testing is mandated by the government, it'southward often washed without the parents' consent, according to Brad Therrell, director of the National Newborn Screening & Genetics Resource Center.
In many states, such as Florida, where Isabel was born, babies' Dna is stored indefinitely, according to the resource eye.
Many parents don't realize their baby's DNA is being stored in a government lab, only sometimes when they find out, as the Browns did, they take action. Parents in Texas, and Minnesota have filed lawsuits, and these parents' concerns are sparking a new debate about whether it's appropriate for a baby's genetic blueprint to be in the government'southward possession.
"We were appalled when we found out," says Brown, who's a registered nurse. "Why do they need to shop my baby's DNA indefinitely? Something on in that location could impact her ability to get a job after on, or go health insurance."
According to the land of Minnesota'southward Spider web site, samples are kept and so that tests can be repeated, if necessary, and in case the DNA is ever need to assist parents identify a missing or deceased child. The samples are also used for medical research.
Art Caplan, a bioethicist at the University of Pennsylvania, says he understands why states don't first enquire permission to screen babies for genetic diseases. "It's paternalistic, but the state has an overriding interest in protecting these babies," he says.
However, he added that storage of Dna for long periods of fourth dimension is a different thing.
"I don't see any reason to practice that kind of storage," Caplan says. "If information technology's bearding, then I don't care. I don't have an event with that. But if you lot keep names attached to those samples, that makes me nervous."
DNA given to outside researchers
Genetic testing for newborns started in the 1960s with testing for diseases and conditions that, if undetected, could kill a child or cause severe bug, such equally mental retardation. Since then, the screening has helped save endless newborns.
Over the years, many other tests were added to the list. Now, states mandate that newborns be tested for anywhere between 28 and 54 different conditions, and the DNA samples are stored in country labs for anywhere from 3 months to indefinitely, depending on the state. (To find out how long your baby's DNA is stored, run across this state-by-country listing.)
Brad Therrell, who runs the federally funded genetic resources consortium, says parents don't need to worry well-nigh the privacy of their babies' DNA.
"Us have in place very rigid controls on those specimens," Therrell says. "If my children's Deoxyribonucleic acid were in 1 of these land labs, I wouldn't be worried a bit."
The specimens don't always stay in the state labs. They're ofttimes given to outside researchers -- sometimes with the baby'due south name attached.
Co-ordinate to a study done by the state of Minnesota, more than than twenty scientific papers have been published in the Us since 2000 using newborn blood samples.
The researchers exercise not have to take parental consent to obtain samples as long as the baby's name is not attached, according to Amy Gaviglio, one of the authors of the Minnesota written report. Even so, she says it's her agreement that if a researcher wants a sample with a baby's proper noun attached, consent first must be obtained from the parents.
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Scientists accept heralded this enormous collection of Deoxyribonucleic acid samples every bit a "gold mine" for doing research, according to Gaviglio.
"This sample population would be virtually incommunicable to get otherwise," says Gaviglio, a genetic counselor for the Minnesota Section of Health. "Researchers go through a very stringent process to obtain the samples. States certainly don't provide samples to only anyone."
Dark-brown says that even with these assurances, she however worries whether someone could proceeds access to her baby's DNA sample with Isabel's name fastened.
"I know the government says my babe'due south data volition be kept individual, but I'm non so sure. I feel like my trust has been taken," she says.
Parents don't requite consent to screening
Brownish says she first lost trust when she learned that Isabel had received genetic testing in the first place without consent from her or her husband.
"I don't take a problem with the testing, but I wish they'd asked united states offset," she says.
Since health insurance paid for Isabel's genetic screening, her positive test for a cystic fibrosis gene is now on the record with her insurance company, and the Browns are concerned this could hurt her in the future.
"Information technology's really a black marking against her, and there's nothing nosotros tin do to get it off there," Brown says. "And permit's say in the futurity they tin can test for a gene for schizophrenia or manic-depression and your baby tests positive -- that would be on there, too."
Brown says if the hospital had offset asked her permission to exam Isabel, now 10 months old, she might have called to pay for it out of pocket then the results wouldn't exist known to the insurance company.
Caplan says taking Deoxyribonucleic acid samples without request permission and then storing them "veers from the norm."
"In the military, for example, they accept and store DNA samples, but they tell y'all they're doing information technology, and y'all can choose non to join if you don't like it," he says.
What can parents practise
In some states, including Minnesota and Texas, the states are required to destroy a baby'south Deoxyribonucleic acid sample if a parent requests it. Parents who desire their baby'south DNA destroyed are asked to fill out this form in Minnesota and this form in Texas.
Parents in other states have less recourse, says Therrell, who runs the genetic testing group. "Yous'd probably have to write a letter to the state saying, 'Please destroy my sample,'" he says.
He adds, nevertheless, that it'due south not clear whether a state would necessarily obey your wishes. "I suspect it would be very difficult to get those states to destroy your infant'southward sample," he says.
CNN's John Bonifield and Jennifer Bixler contributed to this report
Source: http://www.cnn.com/2010/HEALTH/02/04/baby.dna.government/index.html
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