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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?’"
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