Storage of newborns’ blood samples raises privacy concerns

clipped from www.theglobeandmail.com It’s a routine test conducted on newborns – a quick needle prick to the heel to test for a range of health disorders and diseases before an infant is discharged. But the newborn screening procedures, which exist across North America and most of the developed world, have run afoul of privacy advocates because the genetic material collected from infants when blood is drawn is routinely used for other purposes, chiefly medical research. Millions of infants’ blood samples – along with their names and birthdates – are stored on information cards in laboratories across Canada. What has riled civil libertarians and privacy advocates is that parents aren’t told that their babies’ genetic blueprint will be stored indefinitely, and perhaps used for research purposes. Instead, parents are told the blood samples are crucial to test for disorders such as hypothyroidism, and more recently, cystic fibrosis. British Columbia stores the genetic information of about 800,000 infants.

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