The state of California is keeping the DNA of newborn babies in order to compile a statewide database. The state obtains this DNA from a heel prick that is designed to detect congenital disorders. Most mothers have said that they hardly even remember the doctors mentioning such a test.
California mother Danielle Gatto said, “I don’t think that any woman is in a state of mind to sit down and start studying up on the literature they send you home with.”
However, this blood is not thrown away. Gatto later found out that the state collects the DNA and stores it in a database. The state does mention this, but it’s hidden deep inside information regarding the Newborn Screening Program. Most new mothers are unlikely to have the presence of mind to read such literature.
The DNA is stored in an obscure building in Richmond, CA. Inside the building contains the DNA of every person who has been born in California since 1983. This database can be used to determine everything from eye color to the likelihood of developing dangerous diseases.
And it’s not just health services that are using the DNA. The DNA can also be requested by law enforcement officials and by private companies. Worse yet, the consent of the individual in question is not needed. Basically, private research on a person can be conducted without the permission of that individual.
According to the California Department of Public Health, parents can request that the DNA samples for their children be destroyed. Additionally, the DNA is de-identified, making it difficult to trace back to the owner. That being said, the department refused to answer further questions.
Still, even if the DNA is de-identified, a person with a genetics background could cross-reference the DNA with online information and trace it to a specific person.
Genetics expert from Columbia University Yaniv Erlich said, “You need to have some training in genetics, but once you have that kind of training the attack is not very complicated to conduct.”
However, Erlich doesn’t believe that there is a privacy risk involved. In fact, he has started a website where people can voluntarily donate their DNA for the benefit of everyone. Many people have already been saved thanks to genetic sharing.
Erlich explained, “I want to stress that sharing genomic information is highly important, to advance biomedical research. This is the only way that we can help families with kids that are affected by these devastating genetic disorders.”
Still, some people like Gatto are suspicious, as she said, “We are at the beginning of a frontier of so much genetic research. There is no knowing at this point in time what that info could be used for. The worst thing as a parent is to think that a decision that you are making today may negatively affect your children down the road.”
In the end, Gatto had the DNA for her two children destroyed. While the program could indeed save the lives of many people, some individuals just aren’t comfortable with having their DNA readily available. Even though the program has good intentions it’s a little intrusive, and the state should be more up-front about it.
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