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Are we ready for the ethical issues surrounding newborn genetic screening?

| | January 11, 2019

In the not-too-distant future, it will be possible to get a complete readout of a person’s genetics with ease, even right after they’re born. A new study published [January 3] offers a glimpse of what that future could look like, suggesting many children are born with genetic conditions that can’t be found with current screening. But the study also raises important ethical questions about how best to handle the predictions these tests will provide families and their doctors.

The more than 300 families who volunteered for the BabySeq Project were randomly assigned to two groups. Those in the control group would get the same sort of usual care, including standard genetic screening for the newborns and genetic counseling for caretakers with a family history of genetic disease. Newborns in the second group would get all that and also have their DNA sequenced in whole.

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Of the 159 babies who received genetic sequencing, 15 (9.4 percent) were found to have mutations that raised their risk of health conditions likely to show up before they turned 18. These conditions included an enlarged heart, hearing loss, or severe kidney disease.

Leaving health aside, should parents be able to know about the potential traits of their children even before they’re delivered out into the world? And if so, should they be allowed to act on it?

Read full, original post: Sequencing the DNA of Newborns Uncovered Hidden Disease Risks and a Whole Lot of Tricky Issues

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