Nias Füßchen originally uploaded by Torsten Mangner
As many of you know, we recently had our first child and in a post I wrote just before he was born, a regular reader/commenter mentioned, “Your new dad experiences are going to be amazing fodder for this blog, I suspect.” At first I scoffed at this statement, believing that my mission of “South Metro News Source” needed to be upheld, and there was just no way I would be posting anything googoo-gaagaa related on this site. Well, as I have made my way through this parenthood process I have found plenty of things to get my blood boiling and in a way which directly relates to the mission of this website to keep politicians’ feet to the fire and ensure that the public is protected.
Within the first twenty eight days of life, Minnesota (as well as every other state in the nation) requires a blood sample be taken from newborns, testing for a variety of congenital defects done, and then the results and sample be sent to the state for storage–indefinitely. Yes, you heard that correctly, I said indefinitely. Yes, you as parents can indeed decide to opt-out of this indefinite storage of your child’s DNA but only in writing (via this form–something I suggest *ALL* parents do right now) and only with the knowledge that it will be held for two years anyway. Who knows what could happen to your child’s sample in that time–without your consent–such as what occurred in Texas between 2002 and 2007:
But beginning in 2002, the DSHS contracted Texas A&M University to store blood samples for potential use in medical research. These accumulated at rate of 800,000 per year. The DSHS did not obtain permission from parents, who sued the DSHS, which settled in November 2009.
Now the Tribune reveals that wasn’t the end of the matter. As it turns out, between 2003 and 2007, the DSHS also gave 800 anonymised blood samples to the Armed Forces DNA Identification Laboratory (AFDIL) to help create a national mitochondrial DNA database.
It’s not like our representatives are not trying to get that law changed. According to Representative Tara Mack (37A), whom I spoke with on the phone earlier in the week, lawmakers have attempted–and failed–to get the law changed to something a little less draconian and with limits on the amount of time which the sample can be held (in one suggested revision, destroyed after 25 months). Unfortunately this never saw the light of day but Rep. Mack states that they will continue attempts to push through legislation that favors parents opting-in rather than forcing them to opt-out.
Now, even with all of this discussion about what’s wrong with the way the statute is currently written, there are some provisions already written into it which are meant to protect parents and their children. Unfortunately, at least in my direct experience and the information gathering that I’ve done at the hospital my wife gave birth at, it would appear that the provisions are not being followed exactly as they probably should.
Let’s start with “Subd. 3. Objection of parents to test.” In this section the statute says, “Persons with a duty to perform testing under subdivision 1 shall advise parents of infants…” While legislators have attempted to change the word “shall” to “will” in the failed bill linked above, the meaning is still one of obligation–not choice–but as I experienced, this really just means that they’ll hand you a packet of information which may (or may not) include a pamphlet of vague information about the testing, along with about 25 other individual sheets of paper on any variety of junk and another 10 pamphlets, while your wife is bent over double at the waist in pain, intermittently crying and/or screaming, and believe that they have met the requirements per statute.
Well, I argue that this is not what was meant when the statute was written. When the statute says, “persons with a duty to perform testing,” they mean the hospital staffer who comes in to notify you that they’re taking your child to the nursery for the blood sample–not for the staffer at the desk 48 hours before while the mother is in labor to hand you a huge packet of information and send you on your way. When they state, “shall advise,” the authors of the statute probably weren’t intending for a hospital to provide an outdated 10 page booklet, the size of 1/4 of a page, with very vague references to the rights of the parent to avoid testing/storage of their child’s blood. (FYI: the pamphlet we received was dated 01/2008 and a clearer version is now available from the Minnesota Department of Health dated 07/2009–you know, 6 months earlier than when my son was delivered so plenty of time for them to update their material).
Now, being that the statute is obviously worded in a way which does not allow for me, as a new parent, to properly address the issues I have with the hospital choosing not to properly inform me of my rights from the get go, something has to change. If I had not been told, by another parent, that I should opt-out of the state storing my child’s information (and not being able to stop them from using his results or even his blood without my consent) I wouldn’t be writing this right now and I would be living in blissful ignorance. Being that something needs to change, I am making it my mission to keep this issue in the public eye and at the top of our local legislators’ agendas. As I stated above, I have already spoken with Representative Tara Mack and I have a meeting with Senator Chris Gerlach next week. I intend to keep in touch with them and keep the pressure on and I hope you do too (you can find those who represent you here).
There is absolutely no reason why the state should be permitted to use our children’s blood for anything other than the testing without our direct and specific consent. They also should not be permitted to hold on to it, for any reason, longer than it takes to perform the tests. Do you agree? Do you think that what happened in Texas is acceptable and are you even the least bit concerned that it may have even happened here in Minnesota? How about the fact that Children’s in St. Paul is able to pass out an outdated booklet on the rights parents have and I have absolutely no recourse but to moan and groan on the Internet?
Whatever you have to say about Minnesota’s statutes regarding storing your child’s blood after mandatory newborn testing go ahead and comment on as I’d love to hear what you have to say.