Ethical issues as scientists peek into baby genes

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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.

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 Women's Hospital in Boston and the University of North Carolina, Chapel Hill _ will go a step further by enrolling healthy infants as they explore what kind of information parents want about their babies' future.

“We aren't even sure that genome-scale sequencing in newborns is really a good idea,'' cautioned UNC lead researcher Dr. Jonathan Berg in a recent Facebook chat to alert the community about the study. Rather than a one-time mapping, it's possible that ``we will use targeted sequencing at certain times in a person's life, when that specific information will actually be medically useful.''

For those pioneering babies whose DNA is being mapped already, researchers are “trying to figure out what is legal, versus ethical, versus good medicine'' in revealing results, said Joe Vockley, Inova Translational Medicine Institute's chief science officer.

Mom and dad may be told something their child, once grown, wishes hadn't been revealed. Other findings may be withheld now that would be good to know years later, as new treatments are developed.

“This is a living, breathing problem,'' Vockley said, ``not a static decision that's made, and it lasts for all time.''

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