States collect, sell DNA taken from babies

Americans don’t trust government.

And, considering how much taxpayer money goes into collecting our personal data, government must not trust Americans.

A federal judge has ruled the bulk collection of phone data by federal agencies is “likely” unconstitutional. The government filed an appeal, which means the data collection will continue, despite what you may hear from politicians who preach the sacredness of the Constitution.

As creepy as the phone stuff sounds, it seems much less personal than what’s happening in California, where, unbeknownst to most parents, the DNA of babies has been harvested for decades.

Even creepier, the DNA is for sale.

CBS News reports the DNA is cataloged as part of the state’s “Newborn Screening Program.” Hospital workers, shortly after a child is born, prick the baby’s heel and collect blood, which is used to screen for various congenital disorders.

Most parents think the unused blood is discarded, but the extra drops are placed on a card and stored in “a non-descript office building in Richmond contains the DNA of every person born in California since 1983. It’s a treasure trove of information about you, from the color of your eyes and hair to your pre-disposition to diseases like Alzheimer’s and cancer,” the report says.

Law enforcement agencies can access the data, which is also sold to private companies — presumably those working to cure childhood diseases.

The California Department of Public Health declined an interview, but privacy experts have concerns.

One geneticist said it was pretty simple to take “anonymized DNA, cross-reference it with online data and connect it to a name.”

What would anyone do with such info? No one knows, but some feel parents should be able to opt out of the data collection.

California lawmaker Mike Gatto requested that the DNA obtained from his child be destroyed, and introduced a bill requiring parental consent. “Opposition from the state and the industry killed it,” writes CBS.

I’m not sure if Georgia has a program similar to California’s, but Florida also retains DNA taken at birth, according to a 2010 CNN article which says parents in Texas and Minnesota have filed lawsuits to get DNA destroyed.

A 2011 study concludes “all 50 states plus the District of Columbia operate newborn screening programs” and “the lack of transparency on the part of states in retaining [DNA] may undermine public trust in state newborn screening programs and the research enterprise.”

The trove of DNA surely helps advance science, but shouldn’t parents be able to veto the bulk collection of DNA samples? I say yes, but a pharmaceutical company with a lobbyist probably says no.

 

 

 

 

 

 

 

 

 

 

 

 

 


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