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Unprecedented Pact Reached With Lacks’ Descendants

GENETIC PRIVACY—U.S.

August 8, 2013

In an unprecedented move, the National Institutes of Health (NIH) announced an agreement with the descendants of Henrietta Lacks, whose cervical cancer cells were taken without permission by scientists 62 years ago, giving them control over which biomedical researchers will gain access to the full genome data derived from her cells, MSNBC reports. NIH Director Francis Collins said it is an “historical agreement” that will “protect the family’s interest and also further their commitment to biomedical research.” In a column for Nature, Martin Bobrow writes on the “growing issue in modern science: access to biomedical and health-related research data.”
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