Despite her hardscrabble upbringing as a poor black tobacco farmer in rural Virginia — or maybe because of it — Henrietta Lacks had a generous soul.
She kept her husband, five children and assorted relatives fed with rice pudding, slow-cooked greens and spaghetti and meatballs. When cousins from the country arrived in Baltimore, she offered them a place to sleep, packed them lunches, rode the streetcar so they wouldn’t get lost and even helped them find girlfriends.
“She was just a loving, giving woman,” her granddaughter, Kim Lacks, said.
So it seems only fitting that Henrietta Lacks’ cells — known as HeLa cells — have led to groundbreaking medical advances, helping countless people since her death of cervical cancer in 1951.
“That’s just incredible to know she’s still giving in death the way she did when she was still alive,” Kim said.
That remarkable legacy is the subject of Rebecca Skloot’s nonfiction book, “The Immortal Life of Henrietta Lacks,” Cuesta College’s 2017 Book of the Year. (An HBO movie based on the book and starring Oprah Winfrey premieres April 22.)
The New York Times best-seller reveals how Henrietta Lacks’ cells — taken from a cancerous tumor without her knowledge or permission by doctors at Baltimore’s Johns Hopkins Hospital months before her death at age 31 — have become the standard laboratory workhorses of the scientific community. The first immortal human cells ever grown outside a laboratory, they have led to biomedical breakthroughs including the polio vaccine, chemotherapy, cloning, gene mapping and in vitro fertilization.
Lacks’ family didn’t learn of their existence until the 1970s.
Since then, the Lacks family has fought to reclaim her legacy and protect her descendants’ interests. While biotech companies have made untold fortunes selling HeLa cells, and scientists have filed more than 17,000 U.S. patents involving those cells, the Lackses have never received a penny of any profits. Ironically, her husband and children struggled to afford health insurance.
Two of Henrietta Lacks’ grandchildren — Kim Lacks and Alfred Carter Jr. — will participate in a presentation and book signing April 12 at Cuesta’s Cultural and Performing Arts Center in San Luis Obispo as part of Cuesta’s Book of the Year program. It is co-sponsored by San Luis Obispo City-County Library.
Earlier that day, they’ll join Cuesta and Cal Poly faculty and students for a panel discussion and workshop at Cuesta’s San Luis Obispo campus.
Kim Lacks said the talks will focus on the scientific discoveries made possible by her grandmother’s cells — they’ve helped develop drugs for treating leukemia, herpes, hemophilia and Parkinson’s disease, and have been used to research appendicitisand sexually transmitted diseases — and the ethical issues that surround them. cut bc insert was too long
“People all over the world are alive because of her cells,” Lacks said.
“They know about the HeLa cells but not about the person, the woman, the mother, the aunt, the cousin” they once belonged to, she continued. Skloot’s award-winning book, published by Crown Publishing Group in 2010, shines a light on the woman known to researchers for decades as HeLa, Lacks said, giving “a human side to the human cells.”
Despite the fact that mass-produced HeLa cells, bought and sold by the billions for more than $250 a vial, have been used in experiments across the globe, Lacks’ family learned of their existence only by accident, Kim Lacks said.
Although the Lackses are unlikely to receive financial compensation for their family’s contributions to science anytime soon, the cells’ usage has highlighted concerns about privacy and patients’ rights.
After a team of scientists at the European Molecular Biology Laboratory published the genetic makeup of HeLa cells in 2013 — putting the family’s privacy at risk — the Lackses worked with the National Institute of Health to determine how information about the cells’ genetic makeup should be published.
Later that year, the Lackses and the NIH signed an agreement limiting access to Henrietta Lacks’ genome data to biomedical researchers whose applications are reviewed by a group that includes Lacks family members. Those selected are asked to acknowledge the Lacks family in their publications.
“We don’t want to stop science and the advances that they’ve made using her cells,” Kim Lacks stressed, “but we still want to have people to respect us and have (us) involved in making a decision on this.”
While family members are torn about how to best handle Henrietta Lacks’ legacy — in February, oldest son Lawrence Lacks called for a congressional inquiry into Johns Hopkins Medicine’s unauthorized use of her cells — Kim Lacks said she’s embraced the decision, stated on the family’s official website, to move “from being victims, to (the) victory of a proud family heritage.”
“At the end, we felt … we can’t focus on the negative. Look at all the positive that’s come from this,” explained Kim Lacks, one of a handful of Lacks family members who speak publicly about her grandmother’s legacy.
“People come up to you with tears in their eyes, thanking you and praising you because their mother is in remission because your grandmother helped create this medicine, or they had in vitro fertilization because of your grandmother’s cells,” she said.
“When you look at all those aspects, all those negative things tend to go out the window,” she continued. “You just feel proud. ‘Wow, I’m part of this legacy.’ It’s an overwhelming feeling.”
Her grandmother’s reach now extends farther than ever.
Henrietta Lacks, who was awarded an honorary doctorate by Baltimore’s Morgan State University in 2011, was the inspiration behind the annual HeLa Women’s Health Symposium at Atlanta’s Morehouse School of Medicine. A high school in Vancouver, Washington, also bears her name.
The Henrietta Lacks Foundation, established in 2010, provides financial assistance to individuals and their families “who have made important contributions to scientific research without personally benefiting from those contributions,” according to the nonprofit organization’s website. (Members of the Lacks family have received more than 50 grants, including grants for health care, tuition, job training and emergency relief.) And Carter, Lacks’ grandson, has established the Henrietta Lacks House of Healing in Maryland to help disabled men and woman suffering from substance abuse.
Lacks’ legacy will spread further with the release of HBO’s “The Immortal Life of Henrietta Lacks” on April 22. It stars Rose Byrne as Skloot, Renee Elise Goldberry as Henrietta Lacks and Oprah Winfrey as her youngest daughter, Deborah Lacks, and includes a few cameos by Lacks family members. (Although Lawrence Lacks said the docudrama exploits his mother’s legacy, David Lacks Sr. and nine other family members issued a statement endorsing the movie via the Lyceum Agency.)
Ultimately, Kim Lacks said, she’d like her grandmother to be remembered as someone who changed history and shaped society — just like the influential black women who came before her.
“I want our generation and the generation after us to know my grandmother the same way they know Harriet Tubman, the same way they know Rosa Parks,” said Lacks, whose grandmother’s portrait hangs in Baltimore’s City Hall. “Her contribution to science speaks volumes.”
‘The Immortal Life of Henrietta Lacks’ talk and book signing
When? 5 to 7 p.m. April 12
Where? Cultural and Performing Arts Center, Cuesta College, San Luis Obispo
How much? $5
(Although advance tickets are sold out, they can be purchased on a first-come, first-served basis at the CPAC box office the day of the show.)