The Tissue Samples That Changed Medicine

Henrietta Lacks' cells led to medical advances and profits, but her family remained in poverty

Rebecca Skloot tells a story of genes, medicine, profits and poverty to a packed audience in the Sanford School's Fleishman Commons.

Cancer cells taken from Henrietta Lacks, a descendent of slaves, were crucial to the development to the polio vaccine, the biomedical industry and several Nobel prizes, but Henrietta's children struggle with poverty and lack of medical insurance.

Rebecca Skloot, author of the best-selling book, "The Immortal Life of Henrietta Lacks" gave the Crown Lecture in Ethics about the ethical issues raised by Henrietta's story to a full house in the Fleishman Commons at the Sanford School of Public Policy on March 24.

Skloot worked for 10 years uncovering the story of Henrietta and her family.  She began by reading the scene from her book where Henrietta enters the colored wing of the Johns Hopkins medical center in 1951, seeking treatment for "a knot in my womb." Without Henrietta's knowledge or consent, a slice of the tumor on her cervix was sent to a lab, standard practice then. Henrietta's cancer was very aggressive, and she died later that year. These aggressive cells, dubbed HeLa, grew aggressively in the lab, too, doubling in number every 24 hours.

Two decades later, scientists contacted the Lacks family to obtain DNA samples from them to learn what was special about the HeLa cells. The Lacks family was poor, little educated and shocked to hear about the HeLa cells.  

The scientist talked about having Henrietta's cells, still alive in a lab. "What Henrietta's husband heard, was that his wife was still alive and they had her in a cell," said Skloot. "The only kind of cell he knew was a jail cell."

The scientists also didn't understand that the Lacks thought they were being tested for cancer, and the fear this caused the family, especially Deborah, Henrietta's youngest daughter. They also didn't understand the family's suspicion of doctors. "There is a long oral history and documented history of experiments on black people that lives on powerfully in Baltimore," Skloot said.

By the time Skloot contacted the Lacks family 1990, she was just another "in a long line of white people wanting something from them." Henrietta's sons wanted a share of the profits everyone else seemed to be making. Deborah wanted to know about her mother. Skloot persisted and finally won over Deborah by promising to share all her research with the family.

During the ethical issues raised by the book were explored more during question and answer session. Sanford Dean Bruce Kuniholm asked, "What ethical question is most important to share with the medical community?"

"The issue that gets the most attention is, who profits?" said Skloot. "The core irony is that many people benefited, but the family was harmed."

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Science writer Rebecca Skloot tells the story of Henrietta Lacks at the Sanford School. Photo by Kevin Seifert.

Skloot thought the bigger issue with informed consent and disclosure is how to be able to move forward and not interfere with the science. Current practice is to take tissues with the patient's consent and remove any identifying information. That can hamper science too, Skloot said. Now tissues can be indentified through DNA even if the names were removed from the samples, so it's not clear whether there is any value in keeping samples anonymous.

Another questioner thought the scientists in the 1970s who took samples should have treated the family better. Skloot responded that the scientists were "truly shocked" that the family didn't understand. "There is a gap between scientists and the general public and a fear of science," she said. 

Better communication is key to true informed consent, Skloot said. There needs to be people who can act as translators of culture as well as language. This led to a discussion of the issues of status and power in medical care, including pharmaceutical companies doing trials on poor populations in India, and the patients' fear that asking questions would lead to denial of care.

Skloot said she thought younger scientists understood the importance of interaction and communication than previous generations.

Skloot concluded that medical research standards were not moving in the direction of giving a share of the profits to tissue donors and that there were still great problems of affordability and access to medicine.

 

The Crown Lecture in Ethics, named for benefactor Lester Crown, brings speakers to Duke to explore ethical issues in the arts, sciences, medicine, business and other fields. Previous Crown lecturers include Rwandan Paul Rusesabagina, Pulitzer Prize-winning author and conservationist Jared Diamond, and Nobel Peace Prize-winner Jody Williams, who works to ban land mines.