Oct. 24, 2012 | Medical ethics. Health care access. Privacy issues. Scientific research.
The story of Henrietta Lacks has it all.
The one thing it doesn’t have is her consent.
Born in Virginia in 1920, Lacks was only 31 years old when cervical cancer claimed her life. Although she has been dead for more than 60 years, her “immortal” cells have influenced — and continue to influence — research and major medical breakthroughs in ways no one could have predicted.
Curiosity about these “immortal” cells — known as HeLa cells — and where they originated is what led journalist Rebecca Skloot on a years-long quest to uncover the story of Lacks and the ethical questions her unknowing contribution to science raise.
Skloot, along with members of the Lacks family, visited the University of Arkansas for Medical Sciences (UAMS) on Oct. 22 to discuss her best-selling book on the subject, “The Immortal Life of Henrietta Lacks.”
Skloot presented the Governor Winthrop Rockefeller Distinguished Lecture in the Fred W. Smith Auditorium of the UAMS Jackson T. Stephens Spine & Neurosciences Institute. Joining her for a question-and-answer session on behalf of the Lacks family were Lacks’ son, David “Sonny” Lacks, and granddaughter Jeri Lacks-Whye.
“Ms. Skloot’s book is important because it calls for us to bridge the gap between the scientific discoveries we seek and the reality of disease in people’s lives,” UAMS chancellor Dan Rahn, M.D., said.
Rahn introduced Skloot, and Jon Wolfe, Ph.D., professor and associate dean of development in the UAMS College of Pharmacy, welcomed the audience. Jeanne Heard, M.D., Ph.D., vice chancellor of academic affairs, moderated the question-and-answer session.
The lecture was broadcast to several other locations on the UAMS campus, as well as the UAMS Northwest campus in Fayetteville, UAMS affiliate Arkansas Children’s Hospital, and the eight Area Health Education Centers across the state. Up to 1,500 people viewed the lecture from the combined locations.
“Henrietta’s cells are some of the most important tools we have for medical research and have led to development of the polio vaccine, in vitro fertilization and commonly used cancer drugs. Her cells have traveled on space missions and led to discoveries in cloning and gene mapping,” Skloot said. “But Henrietta’s family didn’t know the cells existed until about 20 years after her death.”
A poor black tobacco farmer in Virginia, Lacks developed cervical cancer at 30. While being treated at Johns Hopkins Hospital in Baltimore, some of her cancer cells were removed, taken to a lab and put in test tubes where they inexplicably began to multiple at surprising rates. Until this point, no one had been able to keep human cells alive for more than a few days.
Scientists quickly realized they had the first “immortal” cells and began disseminating them to laboratories across the country — and ultimately around the world — for research purposes.
When Lacks died about six months later, she had no idea that her cells were being used in research or that they would continue to impact medical discoveries for the unforeseen future.
“Everyone has benefited from these cells. Everyone can see their lives reflected in this story. I think one of the best things to come out of telling Henrietta’s story is that it gives everyday people the chance to understand their lives in relation to medical research,” Skloot said.
For Sonny Lacks, who was only 4 when his mother died, the connection is more personal. “This has been a learning experience for me. I’ve had the chance to learn about my mother by talking to the older generation and through Rebecca’s research. What I’ve found is that my mother was a loving and giving person,” he said.
While the idea that Lacks never gave consent for her cells to be used in research may seem to breach today’s ethical standards, it was commonplace in the 1950s. The ethical “heart of the story” came into play in the 1970s, Skloot said, when researchers contacted the Lacks family for the purpose of engaging them in related research. It was then that the family first learned about the cells’ existence and the fact that they were being sold for profit.
“This is not just about the money. It’s also about people wanting to be proud of their contribution to science and making sure that the discoveries are available to everyone, not just a privileged few,”
Skloot said. She also encouraged scientists to practice better communication with the public about their research, so fear and misconceptions can be broken down.
“This is about more than science and cells. It’s about education, health care access and trust. We all need to facilitate closing the gap of science illiteracy in our country,” Skloot said.
Although Lacks’ granddaughter, Jeri, never met her grandmother, she feels she has grown to know her through Skloot’s book. “This experience has been a blessing to us. When she was alive, she was a giving person, and in her death she is still giving.”
Funding and sponsorship provided by UAMS, the UAMS Graduate School, the Arkansas Literary Festival of the Central Arkansas Library System, the University of Arkansas Clinton School of Public Service and the Winthrop Rockefeller Foundation.