Vera Wojtesta was one of 300 babies flagged by New York's newborn screening program as at risk of having life-threatening Krabbe disease.
Ben Shutts/Courtesy of the Wojtesta family
December 23, 2013 States screen newborns for rare genetic disorders, but increasingly those disorders don't have simple cures, if they have any cure at all. Sometimes the diagnosis isn't clear cut, either. That leaves some parents not knowing the fate of their child.
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Slides containing DNA sit in a bay waiting to be analyzed by a genome sequencing machine.
David Paul Morris/Bloomberg via Getty Images
January 17, 2013 A 2008 federal law is supposed to protect people from having their genes used against them. But it only applies to health insurance — not, for example, long-term-care insurance. That's exactly the type of insurance people might seek after learning they're genetically predisposed to some medical problem down the road.
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