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Every state has a mandatory newborn screening program to test for
serious
genetic
disorders and genetic traits in newborns. Within 48 hours
after the birth of a baby, the heel is pricked, newborn blood is
squeezed onto
a card with special filter paper, and the card is sent for analysis to
the State
government
laboratory or the laboratory under contract with the State Department
of Health.
At least 4.0 million newborn babies are tested every year in the United
States.
Parents are not asked before the newborn genetic testing is done. Most
states mandate the testing. No consent is required. Some states allow
parents to opt out of
testing, particularly for religious reasons. However, parents are not
usually informed that opting out is possible. In fact, most parents
have no idea that the testing is even being done.
However, if they were
given a choice,
most parents would likely choose to have their child tested to speed up
the
diagnosis and treatment of these relatively rare newborn disorders.
This affirmation of newborn screening may change in the future as
newborn screening advocates
contemplate testing the baby's
genome for childhood- or adult-onset diseases. One of the future
concerns with newborn screening, as noted in 2008 by the President's
Council on Bioethics (The
Changing Moral Focus of Newborn Screening) and by Citizens' Council
on Health Care, is the potential slide
to eugenics.
If parents feel concerns about how their child's genetic test
results may impact their children, their own choices, or their
children's options in employment, insurance, or procreation, parents
may begin to avoid
testing or try to
limit the number of conditions for which their child is tested.
Already, some States mandate newborn genetic testing for a
shorter list of conditions and allow parents to opt-out of testing for
a secondary more controversial list of genetic conditions.
The screening of the baby provides insight into the genetic traits
of the mother of the child, as described by Dr. Piero Rinaldo, M.D.,
director of the Mayo laboratory, at a forum on the use of residual
(left-over) newborn dried blood spots ("Bloodspots,
Genetic Research and Privacy" September 23, 2009 forum):
There’s actually an interesting collateral effect of newborn
screening. More and more of the conditions that we screen for, now
we’ve found that abnormal results in a baby is actually because the
mother is affected....I think this could become an angle where we can
actually bring to the attention of obstetricians that [it] is also
their problem because sometimes newborn screening diagnoses not an
affected child, but an affected mother. And it’s the mother who does
have a condition that may or may not be symptomatic.
Dr. Alan Fleischman, MD, Medical Director of the March of Dimes,
stated at the September 2009 forum the following basis for the state's
authority to mandate the genetic testing of children:
"I think it’s very important for us to understand why states
mandate newborn screening and why they mandate considerations of
vaccination before entering school. It’s in the interest of the
children. And we have always held that the State has a parens
patriae [Latin for "parent of the nation"] to override
individual consent by parents when individual children’s interests
are primary. We do have some opting out in these areas and we allow
some families to opt out with various reasons, but in general the
reason that we have such programs is because the state and the public
who have accepted the State’s authority understand the children need to
be served, they need to be served even when parents are somewhat
reluctant."
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