It’s a simple question. Who owns the genetic material that makes us human? And for parents, who owns your baby’s DNA? The proper answer should be that nobody should be able to own or control your DNA, or your child’s DNA, and that you should be able to control access to this information. But reality is quite different. You may be surprised to learn that states have been collecting DNA from newborns and storing it. And they now have millions of samples, with very few controls over what they can use this information for.
The birth of a child is a happy occasion. At some point within a day or so of the birth, a hospital technician is likely to enter the mother’s room and ask to take the newborn for a blood test. Most people simply think that the baby’s new doctor is checking out the health of the baby. But in most cases the blood is actually being collected by the state.
There are a few states that allow parents to opt out of having their children’s DNA taken and stored in some government database. But in most cases those states are not providing the opt-out information to parents unless they ask. Other states don’t give the parents any discretion at all.
The DNA that is being collected is being used for a variety of things, including research. And worst of all, it is perfectly legal.
Last year, the Congress passed S. 1858. This bill allows the federal government to collect and store DNA of newborns without any permission required. It essentially stripped average citizens of their genetic privacy rights. Some states though are trying to do something about it.
Earlier this month, the Texas House began looking at legislation that will allow their citizens to opt out of collection. Minnesota already has such a law, but they have not been providing opt-out information to parents. That’s according to a law suit filed in March against the state.
This collection of genetic information is frightening for a variety of reasons. It is unclear how the government will use DNA data in the future. If the data is ever made available to insurance companies, some children could find themselves uninsurable at birth because they are predisposed to certain genetic conditions. It is also likely to be used to fight crime. This may sound good when you first hear it but the government should not be able to get access to your personal information without your permission and, in the event of a criminal investigation, without probable cause. A court warrant is required for the government to collect your finger prints. DNA collection should have at least the same level of scrutiny.
The point here is that the privacy implications of what the government is doing should be enough to give anyone pause. If anyone you know is having a baby, you need to let them know about this, and they need to ask if their state will allow them to protect their child’s privacy by allowing them to opt out of DNA collection.
byJim Malmberg
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