Who Owns Your Baby's DNA?

If you have not been following HF 1341 and SF 1478, you should know that your baby, or young child's DNA very likely is "out there" and the government has their information stockpiled and already in use for research. No problem to you? Then never mind.

But if you value your child's privacy and the fundamental principles of less government intrusion into private lives, then you should know about the hard work Twila Brase and the CCHC have been doing on your behalf.

Today Jordan Jelinek wrote me this letter she submitted to her representative as an example of what you might say to yours. No need to be rude when writing elected leaders even when they consistently vote against your principles and opinions. I think Jordan strikes just the right tone with this letter.

Dear Legislators,

There is a concern among many constituents in Minnesota over the data privacy of the new born infants. Many of us understand as a matter of fact baby DNA is not state DNA. This is of course true, and the law requires that the DNA database of 820,000 be destroyed. This is not even a dispute between differing ideologies, but a matter of law. I no longer expect my legislators to understand the concerns of state control over baby DNA, however there should be a bare minimum that our legislators understand those concerns do exist.

It is understandable that there are those who want to advance science and to use infants as a vehicle to prove their dedication to such endeavors. Given that the HHS is in violation of the law, and is currently ignoring the law (and there is no evidence to support any other conclusion), the precedent being set here is not one of reasonable men and women. Essentially, supporting HF 1341 and its counterpart 1478 is affirming that science trumps reason. This is doubly troubling to those who have taken a brief look at some of the darker chapters of the history humanity concerning genetic research.

Again, at the bare minimum there is an understanding among many who are aware of the issue that baby DNA is not state DNA. They will grow distrustful of their doctors, and possibly even the medical profession. I implore my legislators to vote against HF 1341 and SF 1478, because I believe unabashedly that all ideologies understand the necessity of the patient/client relationship that is currently in jeopardy. That sacred relationship should not be infringed upon by legislators. We all share the same wonders towards what lies ahead, but lets put our best feet forward.

Sincerely,
    Jordan Jelinek

 
Twila and the CCHS are putting together stories from parents who have had their baby's DNA taken like these below. As she says, "Stories from moms, dads, nurses, grandmothers or anyone who has one would be great. Legislators need to hear what's really going on before they vote on the bill (HF 1341/SF 1478). Be sure to mention in the subject line that you're a constituent so they open it up. Include a comment about the newborn screening bill, HF 1341/SF 1478 so they know this is about something they have to vote on".  If you would like to offer yours or learn more, contact them here: Also, they have a petition New Baby DNA Petition to the Governor you might consider here.

Parent: We have four children. We had no idea that this was being done. The nurses may have brought is some forms for us to sign. If they did, I am sure my wife and I signed them thinking that they were just routine papers when a child is born. Really though, we have no idea if they even had us sign anything. I do know that we were not explained anything about the collection of our children's blood or DNA. I find this very disturbing and outrageous. I want my children's private information back. They are not the state's guinea pigs. They are my wife's and my children, and their blood and DNA is their private genetic information – Taconite, MN

Parent: Our nurses didn't even know we could opt out, or that any collection was going to the government. We kept being redirected as to who to go to to get the right paperwork. Postpartum nurses, nursery nurses, HUCs, no one knew where to find it. Eventually the head nurse got the proper form for us…Everyone was shocked when we told them that the collection was going on…When we got the letter from the government saying that they had destroyed the sample, they didn't spell our child's name correctly. It makes us wonder if they even destroyed our child's sample. – Woodbury, MN