Family of Henrietta Lacks agrees to release of genomic data.

Deborah Lacks wanted answers. In 1974, she asked a leading medical geneticist to tell her about HeLa cells, a tissue-culture cell line derived from the cancer that had killed her mother Henrietta in 1951. The researcher, who was collecting blood from the Lacks family to map HeLa genes, autographed a medical textbook he had written and said that everything she needed to know lay within its dense pages.

It would be more than 30 years before the family got a better explanation.

Now the director of the US National Institutes of Health (NIH), Francis Collins, is trying to make up for decades of slights. Over the past four months, he has met Lacks family members to answer questions and to discuss what should be done with genome data from their matriarch’s cell line.


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