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Chicago-based author Rebecca Skloot helps spur change with bestselling book

Rebecca Skloot, author of “The Immortal Life of Henrietta Lacks”

“Thank you so much, all, for sharing in the joy of this big day. There are no words to express how badly I wish Deborah Lacks was here to be a part of this moment, and all of the advances that will come from it in the future. But I’m sure she’s looking down on all of this and smiling — this is a moment she always dreamed of.”

That’s Chicago-based author Rebecca Skloot writing on her Facebook page about the latest developments concerning a Baltimore woman named Henrietta Lacks, Deborah’s mother and the subject of Skloot’s #1 bestselling 2010 book The Immortal Life of Henrietta Lacks. Oprah Winfrey optioned the film rights.

When Henrietta died of cervical cancer in 1951, cells from her tumor (so-called HeLa cells) were taken without consent and studied for decades by scientists around the globe.

According to a recent New York Times story, many of those cells “have yielded profound insights into cell biology, vaccines, in vitro fertilization and cancer.”

But Henrietta’s descendants, including her daughter Deborah, were left largely in the dark.

As an August 7 story in the journal Nature notes, in 1974 Deborah Lacks “asked a leading medical geneticist to tell her about HeLa cells… 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 took more than three decades to get real answers, provided to Lacks family members over the last several months by the National Institutes of Health.

“It was the first time in the very long history of HeLa cells that any scientists have sat down and devoted complete attention to explaining to the family what was going on,” Skloot said in Nature.

The two parties have reached an “understanding” that gives the Lacks family an unprecedented measure of control over the use of Henrietta’s genome. As for financial compensation, a Lacks relative told Nature that her family “does not want to dwell on money — and that her father has often said he ‘feels compensated by knowing what his mother has been doing for the world.'”