Should Babies Have Their Genomes Sequenced?

For 51 years, newborn babies have gotten a heel-prick test in which their blood is screened for dozens of congenital disorders. Routine newborn screening has basically eliminated the risk of death or irreversible brain damage that some of these disorders can pose if they are not identified right away.

Now some researchers in Boston are trying to find out if genomic sequencing at birth would be as successful.

The BabySeq project is the first randomized, controlled trial to measure the harms and benefits of newborn genomic sequencing. One of four NIH-funded projects granted a total of $25 million to examine genomic sequencing in newborns, BabySeq recently enrolled its first four subjects, three healthy babies and one baby from the neonatal ICU. The researchers got the first baby’s genomic sequence data last week.

The central question for this project is what will come of giving genomic information to parents and their baby’s doctor. Will doctors order more tests and interventions? Will those tests and interventions make babies healthier? Or will they just waste money, or even end up doing...