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Consent at Last

A working group including members of the Lacks family approves the first projects to use the HeLa genome.

By | September 18, 2013

Henrietta Lacks in 1945WIKIMEDIA, IMAGE COURTESY OF THE LACKS FAMILY Four biomedical research groups have been  approved by a National Institutes of Health (NIH) committee to access the HeLa genome under an agreement enacted with the help of the Lacks family in August. The cell line, established in 1951 from cervical cancer patient Henrietta Lacks, was the subject of controversy earlier this year when researchers published the HeLa genome without the consent of Lacks’s surviving family.

The HeLa Genome Data Access Working Group, which includes representatives of the Lacks family and from the NIH, was formed to ensure the HeLa genome would be used in projects consistent with the family’s wishes to preserve their privacy, as well as the cell line’s history of public good. Of six applicants to date, four projects were approved and two are pending, according to NIH.

Last month, when the HeLa genome agreement was reached, science journalist Rebecca Skloot told The Scientist: “What’s important is that this is a very big statement from the NIH and from the scientific community saying, ‘It matters to know what the subjects want and to tell them what’s going on.”’ In that way, yes, this is setting an important precedent.”

(Hat tip to Nature News Blog.)

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