If you could find out your newborn’s vulnerability to future diseases, like breast cancer or heart conditions, would you want to know?
That’s the dilemma parents may soon face as researchers at the National Institutes of Health start a pilot project testing babies for gene mutations that may cause diseases in their future. The five-year project will perform tests on babies at participating hospitals in Kansas City, Mo., San Francisco, Boston, and Chapel Hill, N.C.
In Kansas City, the team will test rapid gene-mapping on sick babies in the intensive care unit to help them diagnose more quickly. At the San Francisco hospital, they will look at genes that are important in childhood but not checked in current newborn blood tests, such as immune disorders or how a child responds to medications. The other two teams will do genome sequencing on healthy newborns and work with parents to learn what information they want concerning their baby’s future.
A privately funded study at Niederhuber’s Inova Translational Medicine Institute in Falls Church, Va., has already led researchers to map the genomes of newborns and family members to help them find genetic patterns that predict serious health issues and developmental disorders. The family’s doctor receives a report detailing “medically actionable findings,” or illnesses that are either preventable or treatable. In many cases, there could be a direct medical benefit for finding out about the diseases before symptoms appear.
The test currently costs several thousand dollars, but prices are dropping. As it becomes more universally available, ethical questions remain: Will parents treat a child differently if they know of potential illness? Does the knowledge cause needless worry? What is the liability if parents—or the child, when grown—are not told of a gene mutation? What about the child’s privacy and inability to give informed consent? Where will the information be stored and who will have access?
In an article for Enrichment Journal, Christina M.H. Powell writes, “In most cases, our genetic blueprint points to likely, but not definite, medical outcomes. In many cases, our environment matters, and often we shape our environment through our own choices. Even with the ability to read our complete genetic book, we cannot fully predict our biological future.”
Powell concludes “… remember God has a plan for a person’s life beyond the plan written in the genetic code. ‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’” (Jeremiah 29:11).