DeCODE Conducting Study Without Permission of Subjects - The Reykjavik Grapevine

DeCODE Conducting Study Without Permission of Subjects

Published June 10, 2013

While the concept of privacy in on everybody’s minds and lips in the wake of the NSA leak, it’s been revealed that DeCODE Genetics is engaging in studies using educational data and genealogical records of subjects without their consent.
As RÚV reports, Eiríkur Baldursson, manager of the bioethics committee, says that the goals of the study being conducted – examining the heredity of dyslexia – justify the use of swaths of test scores and genealogical information without seeking the permission of the subjects being studied.
The DeCODE study is looking at test scores from freshmen at Menntaskólinn í Reykjavík since 1966 and comparing results with the genealogy database of Icelanders to determine if there is a trend for dyslexia within families.

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