Parents Shocked

The public is adamantly in disagreement with storage and research of baby DNA without parent consent. One University of Michigan study by Beth Tarini, Aaron Goldenberg and others ("Not Without My Permission") found 56% of respondents very unwilling, 16 percent somewhat unwilling, 17 percent somewhat willing and only 11 percent very willing. That means 72 percent are somewhat to very unwilling.

As Dr. Sharon Kardia, a Univ. of Mich professor, reported at the September 23, 2009 forum on the use of residual newborn blood spots,

"In my experience in being in these forums and these focus groups, most parents are completely stunned when they find out that their child’s blood is being held by the State. They have no recollection and they think it’s unlawful.

"And then their imagination starts to go and they believe it’s some kind of government plot. I’m totally serious, I’m totally serious. Eugenics, a way of denying people insurance, a way of getting their kids DNA into an FBI database. The cloning one I think is a little far-fetched, however, it still has come up as a legitimate, you know passionate question, which is an indication as well of how far we’ve got to go to do the education here."

"...And that what is really the decay of the public trust, in my assessment, is that there hasn’t been a real public awareness campaign around it. So that it seems that when you get the information that it’s been hidden and hidden for a reason. That you don’t want me to know. That you want to keep it under the radar for what purpose? It looks fishy from the very get-go.

"The recurring questions, actually, are relatively, I’ll call it, simple and they come up everywhere, across ethnic groups...How did they get my blood? What have they been doing with it? You know, why didn’t they tell me? What else haven’t they told me? Why should I trust them now? How are you going to protect it?...And then, who’s paying for this? 

Dr. Aaron Goldenberg, at the December 2009 forum, said there's "the shock of it being done without information about it; the shock of it being done sometimes when people didn’t even know the samples were taken for screening."

The Minnesota Department of Health is just beginning to look at better communication with parents, despite having a 2003 law that allows Minnesota parents to opt their children out of the testing and/or the storage and use of baby DNA. Says Patti Constant who was hired in late 2008,

"We started a whole communication and education unit to be educating and communicating everything we can as much as possible about newborn screening...[W]e’ve met with the immunization folks, because in Minnesota, people can opt out of the immunization, but what the people in immunization are lucky is that when they put out an educational piece about immunization for all the babies, they can just have, like, one teeny little statement that says somewhere and people barely notice it but they can opt out.

"But when we create anything, because of the fervor in Minnesota about it, we have to really highlight and make sure, and with good reason. Parents need to know what their options are. But it’s so how do you balance that?" (Sept 23, 2009 forum)