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Big Brother Alive and Well In California

Every year, millions of newborns throughout the U.S. get a small heel prick, a blood sample to screen for congenital abnormalities. But what happens to that blood sample after those tests? If you were born in California 1983 or later, Big Brother (the California Department of Public Health - CDPH) knows what happened to them.

From the CBS article:
Turns out 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.

Using these newborn blood spots for research, the state is able to screen babies for hereditary diseases. But the California Department of Public Health (CDPH) is not the only agency using the blood spots.
Way back on page 12 of the Newborn Screening Program brochure (found in the papers the hospital sends home with the new mom) is information describing how the state collects blood sample information and stores it in a CDPH database.

Most surprisingly, CDPH will sell the data to private companies for research purposes — without consultation, compensation, or permission of the private parties involved. CDPH claims the blood samples are anonymized and can't be tracked. However, that may not be the case, as Yaniv Erlich, a researcher with Columbia University and the New York Genome Center states, there is no way to guarantee the anonymity of DNA.

Erlich's research demonstrated how easily anonymized DNA could be cross-referenced with online data and connected to a name. "You need to have some training in genetics, but once you have that kind of training the attack is not very complicated to conduct", he said. Erlich feels there is benefit in sharing DNA information to advance biomedical research, but does acknowledge the privacy risk.

At least one person was sufficiently disturbed by this situation to make a request to CDPH that her two daughters blood samples be destroyed. Danielle Gatto thinks the state should be required to at least ask consent before storing and selling her children's DNA.

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 tour children down the road.", said Gatto. Her husband, state Assemblyman Mike Gatto, introduced a bill requiring signed consent on the newborn screening program. Opposition from the state and the industry killed the bill.

(Amazing the bill was killed by state and industry opposition, or maybe not surprising at all)