Whole-genome sequencing of newborn babies presents ethical quandaries

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Whole-genome sequencing of newborn babies presents ethical quandaries
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Genomics England will soon start a pilot project to sequence the genomes of of 100,000 newborns. This could bring medical benefit, but it could also reveal bad news, as our story from May argued

Save time by listening to our audio articles as you multitaskWould you, when your child is born, want to know about it? If effective treatments were available, you probably would. But if not? If the outcome were fatal, would your interest in knowing about it depend on whether your newborn had five years of life to look forward to, or ten? Or 30?

Early diagnosis brings with it the possibility of early treatment. Moreover, sequencing the genomes of newborns could offer a lifetime of returns. A patient’s genome may reveal which drugs will work best in his or her particular case for conditions such as, depression and cancer. Combined with information about someone’s way of life, it could highlight easily discounted health risks such as cancers and cardiovascular disease, leading to better preventive measures.

Such a powerful new technology creates new dangers. Widespread screening for thousands of potentially harmful genes may be counterproductive: some results may worry parents unnecessarily, because some genetic variations, though occasionally indicative of disease, are not strongly so. Parents may not want to unlock all the secrets that their newborn’s genome might reveal. Some may indeed prefer not to know about conditions that cannot be treated.

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