In DepthBiomedicine

Newborn screening collides with privacy fears

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Science  15 May 2015:
Vol. 348, Issue 6236, pp. 740-741
DOI: 10.1126/science.348.6236.740

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The wrinkled heel of nearly every baby in the United States is pricked at birth, and a few drops of blood are dabbed on filter paper and shipped off for analysis. Started in the 1960s, this newborn screening program tests for at least 30 rare and serious diseases that are treatable if caught early in life. Now, many public health experts who help run or advise the program are worried about what the future holds. A new law shaped by a coalition of privacy advocates and conservative politicians requires that any federally funded research on newborn blood spots, which include DNA but no names, first secures informed consent. Seeking consent sounds innocuous, even welcome. But experts are concerned that the law could hamstring not just fundamental research but also the kind of studies that routinely improve screening.