Deborah Lacks first learned of her mother’s legacy when, at age 23, she was contacted by researchers performing genetic tests on her family, according to Rebecca Skloot, author of “The Immortal Life of Henrietta Lacks.” The book, released yesterday, traces the legacy of a medical breakthrough from the donor tissue and the tissue donor’s family to technological and legal innovations. “It’s so much more than a science book," Skloot says. "It’s about the people involved in the science.”
Henrietta Lacks, an African-American farmer from Virginia, died of cervical cancer in 1951 at age 31. A sample of cancer cells taken from Henrietta during treatment — without her knowledge — grew in culture and produced the first immortal cell line, known as HeLa (for Henrietta’s initials). HeLa cells are ubiquitous in the biological sciences due to their so-called immortal properties, such as being able to grow or divide indefinitely and withstand freezing. The cells were used in creating the polio vaccine and have also been involved in controversial experiments that gave rise to bioethics legislation.
Henrietta died when Deborah was two years old, and Deborah didn’t know anything about HeLa cells until a researcher called the family in 1973 to ask if they would donate blood for genetic testing. The researchers wanted to find genetic markers with which to identify the HeLa line. HeLa cells had contaminated other cell cultures and researchers hoped that DNA from the Lacks family would help sort out what was what.
Deborah didn’t know the reason for the tests. She thought that the doctors were checking her for cancer since her mother had died of cancer at a similar age. One researcher gave Deborah a textbook with an entry on HeLa cells and a picture of her mother she had never seen before. It was a black and white photo familiar to many biology students from similar textbooks. Henrietta stands with her hands on her hips. She smiles open-lipped but her eyes might look troubled, at least to the empathetic student who knows her fate.
When Deborah learned that living HeLa cells were used in research, she wondered whether her mother could be at peace while her cells were still alive and if it hurt her mother when people experimented on the cells. Through Skloot, Deborah was able to meet scientists that worked with HeLa cells and learn to understand them. She held a vial of HeLa in her hand kissing it and talking to it. She saw HeLa cells split under a microscope.
"Science education is really in a lot of ways at the heart of this story," Skloot says. Henrietta’s "family wasn’t educated and came to realize at a certain point that maybe, if they had been, some of this stuff wouldn’t have been so traumatic for them."
Eventually, Deborah regarded her mother as a guardian angel that could influence events through her cells. Her cells helped treat sickness, but if she was displeased with a scientist HeLa cells could contaminate samples and destroy research. "You don’t mess with Henrietta — she’ll sic HeLa on your ass!" Deborah said.
Deborah credited her mother with bringing about laws to protect patients when HeLa cells were used in unethical research, but the Lacks family has never directly benefited legally or financially from Henrietta’s contribution to science. Many members of the family do not even have health insurance. Skloot doesn’t want that legacy to continue through her book: A portion of its proceeds will go to Skloot’s Henrietta Lacks Foundation to fund scholarships for Lacks descendants.
UPDATE (since original post on February 3, 2010): Plans are being made for "The Immortal Life of Henrietta Lacks" — the
movie — to air on HBO. The HBO version is being produced by Oprah of
talk show fame and Alan Ball — writer and executive producer of True
Blood and Six Feet Under. Skloot and the Lacks family will receive
credit as consultants on the production. Skloot says the producers are
her “dream team”. At least, Alan Ball should have no problem with the
There will also be a memorial service/ headstone placement for Henrietta
and two of her daughters on May 29. Lots of Hela news.
Photo of HeLa cells courtesy of TenofAllTrades Wikicommons
Photo of Henrietta Lacks courtesy of Lacks family/Smithsonian.com