European Data Protection Digest

DNA Data Withdrawn After Outcry; Blood Samples Retained

GENETIC PRIVACY—EU & IRELAND

March 28, 2013

A research team at the European Molecular Biology Laboratory (EMBL) published work on a cell line widely used in cancer studies known as HeLa, revealing a large portion of its genetic sequence, reports Science Insider. The work was quickly withdrawn when it was discovered that neither the original source nor her descendants had ever given permission for the use or publication of their genetic code. An EMBL spokesperson stated, “We hope that the outcome of this process will be that the genomic sequence of the HeLa cell line will be publicly available for scientific research; however, our first priority are the privacy concerns of the family.” Meanwhile, Ireland Minister for Health James Reilly has ordered the Health Service Executive not to discard more than 1 million blood samples taken from children, The Irish Times reports.
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