Henrietta Lacks became a medical phenomenon when Dr. George Otto Gey took her cells without her knowledge or consent while she was receiving cancer treatment at John Hopkins Medical center in 1951. Roughly 75 years later, her family is trying to keep her legacy alive by telling her story.
Jeri Lacks-Whye, Henrietta’s granddaughter, and Shirley Lacks, Henrietta’s daughter-in-law, visited the University of Wisconsin-Madison Sunday to tell their family's story and emphasize the importance of compassion and understanding in healthcare at an “Interfaith Bioethics Conference,” hosted by the Center for Interfaith Dialogue and the Islamic STEM Association.
Gey created and cultivated the first “immortal” cells — HeLa cells, named after the first two letters of Henrietta Lacks’ first and last name. HeLa cells have significantly aided medical research, helping scientists understand cancer diagnosis, the effects of chemoradiation and the development of several vaccines including Polio, HPV and COVID-19.
“[I want to] make sure that my grandmother's story is told with respect, honor and dignity, and let people know that she died, but she’s still helping others through her death,” Jeri Lacks-Whye said.
Rebecca Skloot’s book “The Immortal Life of Henrietta Lacks” brought global attention to Henrietta Lacks’ story and helped her family finally understand what happened, raising ethical questions about consent, patient rights and racial discrimination as her family faced decades of injustice.
Henrietta Lack’s children first found out about HeLa cells decades later in 1971 when doctors contacted them for blood samples. The Lacks family lived in poverty, facing mistreatment from medical professionals while HeLa cells made millions, prompting the family to campaign for compensation.
Shirley Lacks specifically pointed to Henrietta’s daughter Deborah, who had poor health conditions and had to watch while “companies were making billions and billions of dollars, and she couldn't afford to go to a good doctor.”
Jeri Lacks-Whye echoed this, saying giving her family financial and medical compensation, as well as simply remembering Henrietta Lack’s legacy, would be justice for her grandmother.
“She had a purpose, and her purpose was to help mankind. She helped mankind while she was living… and the same thing in her death — she still helped mankind,” Jeri Lacks-Whye said.
Jeri Lacks-Whye stressed the importance of medical professionals recognizing the humanity of their patients.
“Treat me the way I would like to be treated… as a human being, as a whole person — not as a specimen or just somebody that you can make a dollar off of,” Jeri Lacks-Whye said.
Shirley Lacks said Henrietta Lack’s story taught her to advocate for herself by speaking up and asking questions about her health care.
Jeri Lack’s-Whye now serves on the National Institutes of Health panel, overseeing HeLa genome research. The panel was created to review researchers’ request for the HeLa genome so the family has a say in what information is shared. She called this more of a “partnership” between the family and researchers as opposed to years prior, when the Lacks family was left in the dark.
“They sat down and they listened to what we had to say and what questions we wanted answered,” Jeri Lacks-Whye said. “We just had to keep the faith and make sure we don't think that we're beneath anyone, that we are equal, even though you may know more than me… we still can work together to accomplish a common goal.”
Shirley Lacks said seeing what the family went through, especially Lacks’ daughter, was hard, but she believes forgiveness is “cleansing of the soul.” She added forgiveness is “necessary” for moving forward.
Jeri Lacks-Whye had a different perspective.
“I don't forgive, I can't forget, but I am moving forward. [I’m] making sure I continue to tell my grandmother's story and making sure that whoever we're partnering with, they have respect for the family,” Jeri Lacks-Whye said.
After finishing her novel, Skloot set up the Henrietta Lacks foundation to work with the Lacks family and individuals who have been impacted by medical research done without their knowledge, consent or benefits.
Jeri Lacks-Whye said the family plays an important role in the foundation to keep Henrietta Lacks’ legacy alive, while focusing on helping others — just as Henrietta Lacks did.
Clara Strecker is the state news editor for The Daily Cardinal. She previously served as copy chief. Clara has written in-depth on the 2025 Wisconsin Supreme Court race, the 2024 presidential election and abortion rights. She will spend the summer interning with WisPolitics. Follow her on X at @clara_strecker.
