Minnesota Parents Opt-Out

In Minnesota, where parents have the legal right to opt out of newborn genetic testing or allow the testing to be done and then require the destruction of the blood spots and the genetic test results, the numbers of parents opting out of one or the other have risen every year. At the December 2009 forum, Amy Gaviglio, a genetic counselor from the Minnesota Department of Health, made it clear,

"I don’t have exact numbers as to how many opt-outs we get weekly. We have absolutely seen an increase in opt-outs. That we almost have a full FTE working on destruction.  Mostly because when you think of destruction you think of ‘oh just stick the blood spot in the shredder’ but destruction also means redacting all of the test results and all that information which can take 2 hours a child. So we definitely have seen an increase at least in the directive to destroy, not so much in the refusals. But, definitely an increase in refusals but not such an increase as we’ve seen in storage refusals.” 

Some parents find it difficult to refuse newborn screening. In Minnesota, parents describe their hospital experience as one of being badgered. Some of their stories are published by CCHC.

If they choose the testing, but want the bloodspots and test results destroyed, they often find medical and nursing staffs unaware of their right to do so or to produce the State forms that they must sign to exert those rights. To protect their rights, some parents are now posting the CCHC "Protect Your Baby at the Hospital" Sign.

Ms. Gaviglio asked a panel of speakers the following question about informing parents at the "What do Consumers Think?" session of the December 2009 forum:

"It seems like, from your research, that not surprisingly, parents want information in the pre-natal period. At the state level, we’ve been really struggling as to what is that message. What should it be during that time? Should it include all of the opt-out options or should it just be a blanket ‘Hey this is great. This is going to happen when your baby’s born?’"