Baby’s keepsakes: Tiny footprint, lock of hair, and a DNA sequence? As human genome sequencing grows faster and cheaper, how much should parents learn about their babies’ genetic blueprints? In this recent NPR report, bioethicists and other researchers weigh in on what might happen if whole genome sequencing becomes commonplace.
On the positive side, knowing this data could help doctors screen for numerous genetic conditions at birth (or even earlier), and take steps to improve or correct them. Dr. Alan Guttmacher, director of the National Institute of Child Health and Human Development, told NPR that whole genome sequencing at birth could profoundly shape individuals’ medical care and personal decisions to “have an impact on truly lifelong health.”
However, skeptics warned that sequencing could saddle families with confusing or unwanted information:
There’s plenty of evidence that parents already often overreact to the relatively small amount of data that they’re getting from little spots of blood collected at birth. Bioethicist Mark Rothstein of the University of Louisville says the tests can lead to so-called vulnerable child syndrome.
These children “are viewed as medically vulnerable and medically frail,” Rothstein says. “And so while all the other kids are riding bikes and climbing trees, these kids are sort of sitting in a corner. So they can’t even enjoy a normal childhood.”
On a related note, it’s interesting to see how rapidly genome-sequencing technology has developed in just the last few years. Here’s a small (and by no means comprehensive) sampling of articles on that topic:
1 machine, 4 weeks now enough to sequence human genome, ars technica, 08/10/2009
The $1,000 Human Genome: Are We There Yet? Scientific American, 01/10/2012
The $1,000 Genome, and the New Problem of Having Too Much Information, PopSci, 02/27/2012