‘Immortal Life of Henrietta Lacks’ Tells a True Story of Science, Ethics and Family

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2010-7-20

STEVE EMBER: I'm Steve Ember.

FRITZI BODENHEIMER: And I'm Fritzi Bodenheimer with EXPLORATIONS in VOA Special English. Today we tell about one of the most important scientific discoveries of the last century -- the development of HeLa cells. Reporter Rebecca Skloot explores this in her book "The Immortal Life of Henrietta Lacks." The book is a history of science, professional morals and the human story behind a famous line of cells.

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STEVE EMBER: For much of his career, a researcher at Johns Hopkins University in Baltimore, Maryland had been working to find a way to grow human cells outside the body. George Gey and his team of researchers wanted to grow cancer cells in a laboratory. They believed scientists could study this illness to understand its causes and find a cure.

Dr. Gey tested many different human cells in many kinds of liquid. But the cells always died quickly. However, one day in nineteen fifty-one, his search came to an end. Cancer cells from a patient at the university's hospital were more than just surviving. These cells were growing faster than anyone had ever seen before.

Dr. Gey discussed his findings with other scientists. He provided them with some of these HeLa cells to use in their own research. He began giving the cells to researchers across the country, free of charge. Soon, scientists in labs around the world were using these cells. Later, the production of this line of cells by companies would grow into an industry worth millions of dollars.

FRITZI BODENHEIMER: This kind of cell-line is called "immortal." This means the cells can keep growing and reproducing indefinitely. Normal cells reproduce for a limited time before dying.

For the first time, scientists around the world had a limitless number of cells they could use to test the effects of diseases, medicines and chemicals.

Jonas Salk used these HeLa cells to test the first vaccine for polio. HeLa cells have gone to the moon to test the effect of zero gravity. They have been used to study cancer, AIDS, genetic testing, and drugs for illnesses including influenza, herpes and Parkinson's disease. And, these HeLa cells are still being made, sold and used in research today. One scientist estimated that if all the HeLa cells ever grown were gathered together, they would weigh more than fifty million metric tons.

STEVE EMBER: At this point, you may be wondering just where these famous HeLa cells came from. The first clue is in the name, HeLa. The cells were taken from the cervix of a woman named Henrietta Lacks. The word HeLa uses the first two letters of her first and last name.

Henrietta Lacks was an African-American woman who was a cancer patient at Johns Hopkins University hospital. These cells were taken from her tumor without her knowledge or permission. Henrietta Lacks died of cancer in nineteen fifty-one leaving behind a husband and five children.

FRITZI BODENHEIMER: It was not until the nineteen seventies that Henrietta Lacks' family learned that her cells had been taken and used by scientists. Learning about the existence of these HeLa cells was an emotional and difficult experience for the family.

For the scientists who used these cells, HeLa was just a name. But for the family, Henrietta Lacks was a real person whose absence they continue to feel deeply. It was also not easy for the family to accept that her cells had fueled an industry worth millions of dollars. Yet the Lacks family had very little money, education or health insurance.

STEVE EMBER: Henrietta Lacks' husband and children found out about the experiment done on her when scientists contacted them. The scientists wanted to do research on the family to learn more about the HeLa cells. The scientists conducted this research without their informed permission.

The case of Henrietta Lacks brings up several moral issues. Henrietta Lacks did not give her permission for the cells to be taken from her tumor. And the question remains whether her family had a legal or moral right to receive payment after something of monetary value was made from their mother's cells.

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FRITZI BODENHEIMER: Rebecca Skloot is a science reporter. She first learned about HeLa cells in a biology class when she was sixteen years old. She became very interested in Henrietta Lacks and wanted to know more about her life. But there was almost no information about the person behind these famous cells.

Years later, Ms. Skloot began research for a book about Henrietta Lacks, her cells and their influence on medical and scientific history. The book would take her ten years to research and write. She interviewed many doctors, scientists, lawyers, reporters and experts on medical ethics. She also became very close friends with the Lacks family.

Rebecca Skloot tells this complex story by going back and forth between subjects and time periods. Her book involves three stories. One is an explanation of science, medicine and professional morality. Another is the story of Henrietta Lacks' life. And the third is the reporter's story as she becomes close to the Lacks children and helps them learn more about their mother's influence on medical science.

STEVE EMBER: One story line in "The Immortal Life of Henrietta Lacks" is like a history lesson.

Rebecca Skloot explains about scientific and medical developments. Readers can better understand how informed consent and the question of morality in medical experiments have changed over time.

Today, there are laws in the United States that protect a patient receiving medical treatment. Doctors are required to fully inform a patient about his or her illness. The patient must agree to any treatment. But this practice of informed consent is relatively new.

FRITZI BODENHEIMER: In nineteen fifty-one, Henrietta Lacks did agree to be treated for her cervical cancer. But she was not told that a doctor had taken cells from her body for testing. Rebecca Skloot points out that this was not an unusual medical practice during this period.

Johns Hopkins hospital provided care for poor people who could not pay for medical treatment. She says the common belief among doctors at the time was that they could use their patients in their research in exchange for free treatment.

STEVE EMBER: Rebecca Skloot discusses several well known cases where doctors failed to use moral judgment. One famous example is the Tuskegee syphilis study, which began in the nineteen thirties. The United States Public Health Service and Tuskegee Institute in Alabama studied the effects of the disease syphilis on a group of poor African-American men.

The men were not fully told why they were being studied or what tests were being done to them.

Later, when penicillin was widely available, the researchers denied the men the drug that could have cured their illness. The study lasted for forty years. Most of the men died from syphilis, or problems from the disease. The study was finally shut down after an employee told a reporter about the experiment. The reporter then informed the public.

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FRITZI BODENHEIMER: Rebecca Skloot also did careful research to describe Henrietta Lacks. She writes about Henrietta's childhood on a tobacco farm in Virginia, her marriage and her move to Baltimore, Maryland. She learned from Henrietta's friends that she loved to dance and to paint her fingernails and toenails red.

Ms. Skloot had a difficult time gaining the trust of the Lacks family. But she slowly became friends with the family, especially Henrietta's daughter, Deborah. She helped the family understand the importance of the HeLa cells and accept that the scientific community has gained so much from their use.

Rebecca Skloot says the Lacks family tested everything she thought she knew about faith, science, reporting and race. Ms. Skloot says her book is a result of what she learned along the way.

STEVE EMBER: Rebecca Skloot has established an organization called the Henrietta Lacks Foundation. She has donated some of the money she has earned from the book to the organization. The aim of the foundation is to provide money for family members of Henrietta Lacks. The money will help them get a good education and health care insurance – things that Henrietta herself never had.

Rebecca Skloot says she hopes that scientific companies that have gained from HeLa cells will give back to the family whose ancestor changed the history of medicine.

FRITZI BODENHEIMER: This program was written and produced by Dana Demange. I'm Fritzi Bodenheimer.

STEVE EMBER: And I'm Steve Ember. You can comment this program on our Web site, testbig.com. Join us again next week for EXPLORATIONS in VOA Special English.


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