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    September 19, 2013

    NIH and Lacks Family Reach Deal Over Use of HeLa Genome – The Sequel to The Immortal Life of Henrietta Lacks (free)

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    On March 23, 2013, Rebecca Skloot wrote an OpEd for The New York Times titled, “The Immortal Life of Henrietta Lacks: The Sequel.” It begins like this:

    LAST week, scientists sequenced the genome of cells taken without consent from a woman named Henrietta Lacks. She was a black tobacco farmer and mother of five, and though she died in 1951, her cells, code-named HeLa, live on. They were used to help develop our most important vaccines and cancer medications, in vitro fertilization, gene mapping, cloning. Now they may finally help create laws to protect her family’s privacy — and yours.

    The family has been through a lot with HeLa: they didn’t learn of the cells until 20 years after Lacks’s death, when scientists began using her children in research without their knowledge. Later their medical records were released to the press and published without consent. Because I wrote a book about Henrietta Lacks and her family, my in-box exploded when news of the genome broke. People wanted to know: did scientists get the family’s permission to publish her genetic information? The answer is no.

    To continue reading that story, click here.

    After that OpEd was published, Rebecca gathered a group of scientists, policy makers and bioethics experts to work with the Lacks family, to inform them about the HeLa genome and its possible implications for the Lacks family and for science, and to find a resolution to the issues surrounding its release to scientists and the public. August 7, 2013, an agreement between the Lacks family and the NIH was announced, and the news appeared on the front page of the New York Times, Washington Post, in nearly every other US news outlet, and numerous others abroad. Below you will find a selection of coverage which, when read together, explains the agreement, the process by which it was reached, and more:

    Deal Done Over HeLa Cell Line,” Nature, 8/7/13

    Q&A with Rebecca Skloot: NIH Brokers HeLa Genome Deal , The Scientist, 8/7/13

    Nature Q&A With NIH Director: Francis Collins Explains HeLa Agreement

    Feds, Family Reach Deal on Use of DNA Information, Associated Press, 8/7/13

    Since this agreement was announced, the HeLa Genome Working Group, which includes NIH scientists and two members of Henrietta Lacks’s family, have received and approved numerous applications from scientists hoping to use the HeLa genome in research. You can visit the NIH website where the HeLa genome is now stored to learn more about the HeLa Genome Working Group, to see the research the group has approved, to apply for access to use the HeLa genome in research, and more.

    You can also read about Rebecca’s response to the media’s (lack of) coverage of the initial publication of the HeLa genome without the family’s consent. The release of the HeLa genome was covered by numerous media outlets, but not one story raised the question of whether the family had been contacted for consent to publish the HeLa genome. “HeLa-cious coverage: Media overlook ethical angles of Henrietta Lacks story

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    The Henrietta Lacks Foundation strives to provide financial assistance to needy individuals who have made important contributions to scientific research without their knowledge or consent.