Federal DNA Collections at Birth

A reporter from the CNN news network : (Names removed for Privacy) When AB's daughter, Baby Girl AB, was a month old, her pediatrician asked AB to sit down because he had some bad news to tell her.  Baby Girl AB carried a gene that put her at risk for cystic fibrosis.  There are a host of other blogs related to genetic testing and how patients need support and follow up when given "predictive" information.  This particular blog relates to who should collect and store such personal information. 

Baby Girl AB received further genetic testing at the consent of her parents, and it was determined that she doesn't have the disease.  After digesting the second set of genetic testing results  -- the couple wondered how the doctor knew about Baby Girl AB's genes in the first place. After all, they'd never consented to the original genetic testing.  Also, as a parent, can you imagine being told that your child is at risk for CF and then later finding out that is not the case - I cannot imagine the turmoil and upset this information created in their family. 

Newborn babies in the United States are routinely screened for a panel of genetic diseases. Since the testing is mandated by the government, it's often done without the parents' consent, according to the National Newborn Screening & Genetics Resource Center.

In many states, newborn, babies' DNA is stored indefinitely, according to the resource center. In New Jersey, newborn babies' DNA is stored for 23 years.  In 2008 alone over 125,000 samples of newborn's DNA was collected and stored in a government or state run lab in New Jersey.  While I do not think that parents should forego such genetic screening, I think they should have the right to have the screening done privately and with their complete consent.  While we know the law (GINA) signed by then President George W. Bush is supposed to protect future generations from discrimination based on their genetic profiles, even the National Center for Missing and Exploited Children suggests that only parents or legal guardians should have access to a child's genetic profile. 

Many parents don't realize their baby's DNA is being stored in a government lab, but when they find out, as this couple 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's possession.

"We were appalled when we found out," says AB, who's a registered nurse. "Why do they need to store my baby's DNA indefinitely? Something on there could affect her ability to get a job later on, or get health insurance."  Information from computers is dumped from one system to another all the time - what guarantee do we have that these genetic profiles will not end up in hands of insurance companies, university financial aid offices or future employers. 

A bioethicist at the University of Pennsylvania, says he "understands" why states don't first ask permission to screen babies for genetic diseases. The state has an overriding interest in protecting these babies," he says.  Really, if there is an overriding interesting in protecting babies, why aren't all babies tested.  In New Jersey, in 2007 there were over 116,00 Live Births recorded whereas only 112,255 routinely screened for a panel of genetic diseases.  What was the criteria for not screening the other 4,000 live births? 

The storage of DNA for long periods of time is a different matter. What is the reason that new born's DNA is stored for 23 years  in New Jersey - why not 21 or 25?  Why store the DNA sample at all once the predictive analysis is performed why is it necessary to maintain such personal information in a government run database?

"I don't see any reason to do that kind of storage," says the UOP, bioethicist.  "If it's anonymous, then I don't care. I don't have an issue with that. But if you 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 problems, such as mental retardation. Since then, the screening has helped save countless newborns.  There are enough parents who would freely submit to DNA screenings at Clinical Trials - why does the government believe they have an inalienable right to our DNA?  Are they researching what demographic would genetically be the best President or Athlete or Warrior? 

 (To find out how long your baby's DNA is stored, see this state-by-state list.)  If the diseases are not infectious or communicable, again, why are we storing the personal information.  Remember there ares $$$$ attached to the storage - does the federal government really have that kind of $$$ to continue with this practice  Also, does the federal government have the $$$ to continue to pay for Paternity Tests? 

The federally funded genetic resource consortium, says parents don't need to worry about the privacy of their babies' DNA. "The states have in place very rigid controls on those specimens, If my children's DNA were in one of these state labs, I wouldn't be worried a bit."  Thank you sir, may I have another?

The specimens don't always stay in the state labs. They're often given to outside researchers -- sometimes with the baby's name attached.  Does anyone see an insane intrusion on the privacy of future generations.  Is Glenn Beck right in stating that our future generations are being set up by progressives in our government to lose our rights as outlined by the founding fathers in the Constitution?

The researchers do not have to have parental consent to obtain samples as long as the baby's name is not attached, according to one of the authors of the Minnesota report. However, she says it's her understanding that if a researcher wants a sample with a baby's name attached, consent first must be obtained from the parents.  AB says that even with these assurances, she still worries whether someone could gain access to Baby Girl AB's sample with her name attached.

Scientists have heralded this enormous collection of DNA samples as a "gold mine" for doing research, according to the Minnesota report.  "This sample population would be virtually impossible to get otherwise," according to a genetic counselor for the Minnesota Department of Health. Although the comments are probably not meant to convey that our future generations are just "guinea pigs" for today's researchers - can I read it any other way? 

"I know the government says my baby's data will be kept private, but I'm not so sure. I feel like my trust has been taken," says AB.

Parents don't give consent to screening

AB says she first lost trust when she learned that Baby Girl AB had received genetic testing in the first place without consent from her or her husband. "I don't have a problem with the testing, but I wish they'd asked us first," she says.  Since health insurance paid for Baby Girl AB genetic screening, her positive test for a cystic fibrosis gene is now on the record with her insurance company, and AB is concerned this could hurt her child in the future.  AB should also be concerned for themselves and any other offspring in the future - the records contain enough information to tie in the whole family.  When the laws change in the future to keep pace with technology - will Baby Girl AB's offspring be protected? Will Baby Girl's siblings be affected?

Some  healthcare professionals have commented that at the time of Baby Girl AB's birth, there was probably a package of paperwork for this couple to sign and one document just looks like another.  It is not the norm for a hospital to collect DNA samples without the patient's consent. 

"In the military, for instance, the government can take and store DNA samples, but they tell you they're doing it, and you can choose not to join if you don't like it.  Families can find a private DNA testing facility that offers DNA Storage or DNA Safeguarding and let the military know that they have taken the necessary precautions on their own.  In the event their loved one becomes missing or lost, authorities can have access to the DNA profile upon written consent from the family, legal guardian or donor. 

What can parents do

In some states, including Minnesota and Texas, the states are required to destroy a baby's DNA sample if a parent requests it. Parents who want their baby's DNA destroyed are asked to fill out forms.  Check with your genetic counselor, pediatrician or social worker if they have the forms for your State. 

However, that it's not clear whether a state would necessarily obey your wishes.