If you choose not to have your newborn tested for genetic conditions, are you "endangering" your child?

As newborn genetic testing morphs into adding a newborn's DNA to a database, some prospective parents--and grandparents--are questioning whether the state should rule over testing and use of a baby's DNA.

The newborn testing--growing ever more popular and ever more intrusive--practiced in all 50 states is pretty much forced upon new parents. Often, the baby is taken out for testing--that familiar prick of a heel--before the mother has even had the opportunity to refuse. For those babies born at home, the testing typically comes at the first visit to a physician's office.

I was always in favor of this testing, especially for conditions that can be relatively easily treated, preventing long-term serious effects. This is the case for the condition known as PKU--phenylketoneuria--where the newborn's inability to digest certain proteins can result in irreversible brain damage. These older tests are generally for the accumulation of specific biochemicals in the blood, and are not DNA tests.

But, recently the Children's Hospital of Philadelphia (known as CHOP) announced that they will begin collecting, testing, and storing DNA from newborns--unless the parents opt out of the program. What do they intend to do with the DNA? As I heard it, they plan to build a DNA database they can screen for genes they can study and--perhaps--patent. As with all "great, new ideas", no end of benefits are promised us.

Meanwhile, parents in Nebraska were in court not long ago for refusing to permit blood testing on their newborn infant. Their reasons were religious: letting blood releases some of the body's life. Arguments in court suggested that these parents could be considered to be endangering their child, much in the same way a parent endangers a child who refuses treatment of an injury or immunization.

Changes in public policy all come about from people speaking up and expressing their own views. What do you think about these developments? What defines the line between endangerment, opportunity, and identity theft? Am I needlessly challenging a practice that's more beneficial than harmful?

Marie Godfrey, PhD