For years, futurists have foreseen an era when all newborn American babies would be sent home with a supply of self-knowledge: a readout of their full set of genes, with all it may imply about heightened chances for disease or health.
So how would you feel about that, as a new parent? Eager to absorb any possible indicator of your child's potential future? Or wary that genes are not destiny, and you may spend a lifetime fearing something that never comes to pass?
If you answer, "I'd want to know about my baby's genetic makeup," your sentiments are in line with the majority of parents surveyed in the first poll of new parents about genomic screening, just out in the journal Genetics In Medicine. Researchers from Brigham and Women's Hospital and Boston Children's Hospital led the study. From the press release:
“Several other studies have measured parents’ interest in newborn genomic screening, but none focused on new parents in the first 48 hours," said Robert C. Green, MD, MPH, a geneticist and researcher at BWH and Harvard Medical School and senior author of the study. “Since this is when genomic testing would be of the greatest value, it is especially important to study parents’ attitudes immediately post-partum.”
The researchers surveyed 514 parents at the well baby nursery at BWH within 48 hours of their child’s birth. After receiving a brief orientation to the genome and its impacts on human health, including information about what the genome is, what genes are and how they can affect both health and medical care, 82.7 percent of parents reported being somewhat (36 percent), very, (28 percent) or extremely (18 percent) interested in newborn genomic testing. Results were similar regardless of parents’ age, gender, race, ethnicity, level of education, family history of genetic disease, or whether or not the infant was a first-born child. Parents who had experienced concerns about the health of their newborn, however, were less likely to be interested in genomic testing.
The study was also the first to investigate whether asking parents about their interest in newborn genomic testing would cause them to reject existing, state-mandated newborn genetic screening (NBS), one of the most established and successful public health programs in the world.
“If even one parent had rejected it, that would have been a problem,” said Susan Waisbren, PhD, lead author of the study and a psychologist and researcher in the Division of Genetics and Genomics at Boston Children’s and Harvard Medical School. “But out of over 500 parents surveyed, not one of them questioned or rejected NBS.”
Actually, this newborn-genomic-testing scenario is not all that futuristic — it could become reality as soon as early next year. From the press release:
Green and Alan Beggs, PhD, of Boston Children’s co-direct the BabySeq Project in which, pending IRB review and approval, parents of several hundred healthy and sick newborn infants will be offered genomic sequencing in a research setting beginning in early 2015.
Readers, would you do it?