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08/07/2013

Henrietta Lacks' family consulted after 60-plus years

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Henrietta Lacks. (AP Photo/Lacks Family via The Henrietta Lacks Foundation)

One of the most popular science books of the last few years now has a happy epilogue after it was announced Wednesday that the family of Henrietta Lacks would be consulted on how Lacks' DNA is used.

Lacks and her legacy were the subjects of a 2010 bestseller by Rebecca Skloot. Skloot's book explored how cells from Lacks, a poor, uneducated black woman who died from cervical cancer, were collected without her knowledge or consent in the early 1950s and used in generations of important biomedical research -- a great science boon with sticky ethical implications.

But on Wednesday, with the publication in the journal Nature of Lacks' sequenced genome, the U.S. National Institutes of Health also announced that they had come to an agreement with the Lacks family about the use of her genetic material. 

It will be stored in a database where researchers can submit a request to access it, and a working group that includes family members will handle those requests. The solution tries to balance access to information that has been crucial to a series of medical breakthroughs and the family's privacy, after being shut out of that discussion for six decades.

“The biggest concern was privacy — what information was actually going to be out there about our grandmother, and what information they can obtain from her sequencing that will tell them about her children and grandchildren and going down the line,” a relative of Lacks, Jeri Lacks Whye, told the New York Times.

Nature has a detailed discussion of how the discussions with Lacks family went down.

Skloot, who Nature says was involved with the talks with Lacks family, called today a "historic moment." 

The director of the NIH, Francis S. Collins, also called the announcement historic, and tweeted a picture of himself with some of Lacks family:


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Kate Allen is the Star's science and technology reporter. Find her on Twitter at @katecallen.

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