Ethical issues as scientists peek into baby genes

Oct 07 2013, 15:17 IST
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Little Amelia Sloan is a pioneer: Shortly after her birth, scientists took drops of the healthy baby's blood to map her genetic code. Reuters Little Amelia Sloan is a pioneer: Shortly after her birth, scientists took drops of the healthy baby's blood to map her genetic code. Reuters
SummaryAmelia is part of a large research project that is decoding the DNA of hundreds of infants.

parents and other relatives for comparison. The long-term goal of the privately funded study is to uncover genetic patterns that predict complex health problems, from prematurity to developmental disorders.

But the experimental tests will turn up some gene mutations already well-known to cause serious ailments, and participating parents must choose upfront whether to be told. They don't get a full report card of their baby's genes. Only ones that cause treatable or preventable conditions _ so-called medically actionable findings _ are revealed, to the family's doctor. That means in addition to pediatric diseases, parents also could learn whether a baby carries a particular breast-cancer-causing gene, information useful once she reaches young adulthood.

Nurse Holly Sloan was eager to enroll daughter Amelia, although she thought hard about how she'd handle any bad news.

“If it was something that we could hopefully prevent through diet or exercise or some kind of lifestyle change, we could start with that as early as possible,'' said Sloan. ``I guess I'm just the type of person, I would rather know and address it.'' Five months after Amelia's birth, she hasn't gotten any worrisome results.

Until now, genome sequencing has been used mostly in research involving curious adults or to help diagnose children or families plagued by mysterious illnesses.

But many specialists say it's almost inevitable that DNA mapping eventually will be used for healthy young children, too, maybe as an addition to traditional newborn screening for at least some tots. It takes a few drops of blood or a cheek swab. And while it's still too costly for routine use, the price is dropping rapidly. Whole genome sequencing is expected to soon come down to $1,000, what it now costs for a more targeted ``exome'' sequencing that maps only certain genes and may be enough.

The NIH decided this was a window of opportunity to explore different ways this technology might be used. One of the four teams _ at Children's Mercy Hospital in Kansas City _ will test rapid gene-mapping to speed diagnosis of sick babies in intensive care.

Another will look for narrow sets of genes important in childhood, such as those involved with immune disorders not detected by today's newborn screening or that alter how a child processes medication. ``It's not going to be some sort of fishing expedition throughout the genome,'' said Dr. Robert Nussbaum of the University of California, San Francisco.

The two other projects _ at Brigham and

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