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
When hospital personnel take a small drop of blood from a newborn's heel, they are taking material for a genetic test. However, they are not going to analyze the DNA from that blood sample. The blood, trapped on a piece of filter paper, will be examined in a tandem mass spectormeter. This machine looks for specific chemicals within the blood, chemicals that accumulate if the newborn has certain genetic conditions, such as phenylketouria.
The number of tests now being conducted varies considerably across the country. I wrote some time ago about additional tests now required in Florida. Today's news was about Virginia. Seventeen disorders were added March 1 to the list of 11 disorders already screened for in newborns.
Most of the disorders are rare. Last year 129 children were found to have a genetic disorder. This year, the state expects to find an additional 46 cases, based on the increased number of disorders being tested.
Parents may refuse the testing for religious reasons.
According to the article in the Winchester Star,
With modern technology it’s possible to screen for hundreds of diseases. But it’s only helpful to screen for diseases that can be treated, said Dr. Bryan Kornreich, with Pediatric Associates of Winchester and chairman of WMC’s Pediatrics Department.
Dr. Kornreich was also quoted as stating:
Because screening tests are designed to catch anyone who could possibly have the disorder, they sometimes show false positive results, he added. More tests are required before an actual diagnosis is made. The testing is expensive and stressful for parents and child.
But, he recommends that additional testing not be done unless there's a family history of the disorder.
A national panel is suggesting that states broaden their newborn testing programs to include more of the disorders that can be treated with diet changes. These treatments can prevent brain damage. For more information on newborn testing, check with the March of Dimes or your pediatrician.
Marie Godfrey, PhD
As is often the case, one of the best sources for information is Wikipedia (www.wikipedia.org)--an online wealth of information on many, many topics--in a number of different languages. Just search for "genetic testing".
Marie Godfrey, PhD