This post was originally published on this site
In every postpartum hospital unit across the country, 1-day-old babies undergo the same ritual: A nurse pricks the newborn’s heel and stamps tiny drops of blood onto a paper filter, which is then sent off for a standard screening panel.
Today, that panel checks for unusual bio-markers that may indicate a rare but treatable disease like sickle cell anemia or cystic fibrosis. But what if that same dried blood spot could tell you about the baby’s risk of developing certain conditions later in life — some with no method of prevention or cure?
What if that heel prick could tell you that the baby was almost certainly going to be diagnosed with autism by the time they turned 5? Or that the child would be more likely to develop breast cancer as an adult?
Would you want to know? Would she?
These questions are no longer hypothetical. Tens of thousands of parents have sought such insights by enrolling their newborns in research projects that examine the baby’s genome — the full blueprint for her growing body. As the cost of sequencing plummets, the practice of analyzing hundreds of genes in healthy babies is quietly on the rise, ushering in new questions about where to draw the boundaries of knowledge — and who should get to decide.
Scientifically speaking, the possibilities are almost endless. Since virtually every disease has some basis in our genes, the full genome — with three billion base pairs, coding some 20,000 genes — contains a wealth of data to be mined for lifesaving intel and gut-wrenching secrets.
But the experts are divided. Some say that revealing a risk of an incurable illness will only put parents in distress, bombarding them with despairing predictions for their young child’s life. Others believe any data about diseases that arise in adulthood, like breast or colon cancer, must be excluded, since they violate that future adult’s privacy and autonomy — in other words, the right not to know.