Risk, Refusal, & Backlash

Around the country, some parents who know about the government's baby DNA collection, are avoiding the newborn genetic testing program altogether to keep government from taking and claiming ownership to their child's DNA. They weigh the risk and the rarity and decide not to participate in the testing program. Others opt for private newborn testing (see Part 10). Sylvia Au at the Hawaii Department of Health said at the December 2009 newborn screening forum:

"...because there is a lot of media around newborn screening, we’ve had more refusals lately, although you can only refuse for religious reasons in our state, but we’ve been told that they specifically point to Minnesota as a case of why they don’t want newborn screening because they don’t want their data going to get stored somewhere and they don’t want it used for intelligence and other things."

Why haven't parents been informed about the storage, use and sharing of their newborn's blood samples by State health departments? At the December 7, 2009 forum, Sharon Terry, President and CEO of Genetic Alliance, explained,

"The fear is that more people will choose to not have newborn screening if they were more aware....People basically said you will destroy the newborn screening system by calling to people’s attention that in fact there is one, and that they are using these samples at least for quality control QC/QA stuff."

At the September 2009 forum on the use of residual newborn dried blood spots, professor Dr. Sharon Kardia reported that one-third of the women surveyed would consider opting out of newborn screening if asked about the future storage of their baby's blood spot. Dr. Aaron Goldenberg from Case Western Reserve University said at the December 2009 forum, "if people are not aware of what's happening to their sample they may be more wary of newborn screening generally. And we can all probably agree that that would not be a good thing." He added,

"If we deny people some control, even an opt-out, kind of provoke that mistrust, or that refusal, there may be a backlash against newborn screening in general."

Dr. Kardia, who conducted focus groups on the issue, explains several other points of concern for parents:

"In Michigan where the long list of public surveillance databases can be relatively scary. To imagine that your child’s bloodspot is going to be then hooked up to everything from immunization records to hearing records to vital statistics, you know, you name it, and we’re going to try to link bloodspots to databases, is a very scary prospect. Protection from requisition by criminal justice system or Homeland Security is necessary. This came up over and over again. "