Lacks Family Discusses ‘Immortal’ Ancestor: Medical Ethics of DNA Retreival Questioned
By Emily Blackner
Many people long to make a difference in the world, but rarely do they affect fields as diverse as biology, medicine, literature, and ethics. But Henrietta Lacks did, and Washington College hosted two of her descendants for a talk on Feb. 21.
The discussion with David “Sonny” Lacks and his daughter Kimberly Lacks, son and granddaughter of Henrietta Lacks, took place in Decker Theater at 5 p.m. Students and community members alike attended the event, which was sponsored by the Philosophy Department, the Black Studies Program, the Office of Multicultural Affairs, and the William James Forum.
Henrietta Lacks, a poor tobacco farmer, died of cervical cancer in 1951, leaving behind five children including David, who was four at the time. But Lacks lives on, not only in memory but also through the HeLa line of cells, still the most widely-used cell line today.
These cells have been instrumental in research into diseases like cancer and AIDS and in the fields of gene mapping and infertility studies. The cure for polio would not have been possible without these HeLa cells, and some of the cells have even gone into outer space.
But the doctors at Johns Hopkins Hospital who took the cancerous cells from Lacks did so without her knowledge, and it was only many years after the fact that the Lacks family was informed of what had happened to the cells.
The untold story of the Lacks family was the subject of a recent book by Rebecca Skloot. “The Immortal Life of Henrietta Lacks” has drawn attention from people the world over and generated interest in the family. It also raises questions about medical ethics and about race relations then and now, as the Lackses are African-
Darnell Parker, director of the Office of Multicultural Affairs, opened the talk by welcoming attendees. He was also the moderator of the discussion, which was entitled “Diversity Through Many Disciplines: The Immortal Life of Henrietta Lacks.” His role was to ask the questions which had been submitted in advance and to facilitate the 15 minute live question-and-answer session at the end of the evening.
Skloot’s main ally in the family during the process of writing the book was Deborah Lacks, David’s sister and Henrietta’s daughter. She accompanied Skloot on her travels through Baltimore and parts of Virginia doing research. Deborah passed away before the book was completed, however.
“Her main goal was to let everyone know who Henrietta Lacks was,” said David Lacks. “Deborah would like the book because Rebecca portrayed what she and Deborah researched. She wanted people to know about her mother and she herself wanted to learn about her mother. I think she’d be proud of the book.”
Kimberly Lacks said, “She was filled with so much joy. She would be loving it right now.”
David Lacks, for his part, was less enthusiastic about the project at first, canceling several appointments with Skloot before he finally gave his side of the story.
Now, however, he is pleased with how the book has turned out.
“The book is a good book,” he said.
The Lacks family appreciated the chance to learn more about its ancestor through the interviews Skloot conducted.
“We never really knew about our grandmother growing up,” Kimberly Lacks said. “[Skloot] talked to people who actually knew her to provide us with information we as kids never knew. We never knew she liked to dance.”
The family only ever found one photograph of Henrietta, which can be found on the cover of Skloot’s book. In the aftermath of publication, the Lacks family has received photographs of Henrietta’s cells, which they highly value.
Johns Hopkins Hospital has also provided the Lacks family with “microscope days” to see Henrietta’s cells divide and has erected a statue of her in the main lobby in honor of her contributions to science.
Lacks said that he has no hard feelings toward Johns Hopkins Hospital now, and even goes there for his own medical care, although this wasn’t the case when he first found out that his mother’s cells had been used for research without her permission.
“A bit of anger came over me from the idea that they didn’t inform us of what they were doing. We as a family should have been informed,” he said. He was especially bothered by the fact that the cells have been commercialized and companies are making money from selling them.
With time, the family has come to terms with what happened and is now proud of its ancestor.
“It’s a wonderful feeling to have someone in your family help society like that,” he said.
“I’m overwhelmed,” Kimberly Lacks said. “I’m proud that this was our grandmother. Her blood runs in our veins. You just can’t describe the feeling when people tell you stories about how the HeLa cells have personally helped them.”
Many of the questions the audience asked had to do with race. Baltimore in the 1950s was a very segregated city, and several questions dealt with this aspect of the Lacks’ story. Both Lackses asserted that, while not perfect, from their point of view, things have gotten much better since the time of Henrietta’s death.
Other questions dealt with various family members mentioned in Skloot’s book and the Lacks’ continued sense of Henrietta and Deborah’s presence in their lives even after their deaths.
After the talk, WC hosted a reception in the lobby of Gibson featuring fruit and other finger foods. Attendees also had the opportunity to buy a copy of Skloot’s book and get it signed by the Lackses.
The discussion showed that the family has been able to turn what could have been a very negative event into something positive and uplifting by viewing the circumstances as less important than what came out of them: medical advances that have helped millions and an opportunity to better understand Henrietta.
“From what I gather, she was a very giving person,” David Lacks said. “And if she was alive today to give those cells to the medical professionals to do what they did, she would have.”