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.”
April is “Truth About HIPAA” Month!