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by Carol Kaufmann, AARP Bulletin, February 2010
In 1951, a poor black woman went to Johns Hopkins University to be treated for cervical cancer. While a doctor was giving her a radium treatment, he took a sample of her tumor and gave it to a researcher looking for a cure for the deadly disease. The researcher had been trying to grow cancer cells outside the body for decades, with no success.
But the cells from this patient, Henrietta Lacks, were different. Not only did they multiply, they wouldn’t stop growing. These cells, known today as HeLa, were the first to become what scientists call immortal. They would continuously divide, multiply and never die.
Henrietta died shortly after her 31st birthday in the same year she was diagnosed, but her cells traveled all over the world for cancer research. Soon, scientists engaged in other pursuits learned of their value, and medical research on cells exploded. The cells helped Jonas Salk and his team discover the vaccine for polio. They have helped scientists better understand how innumerable viruses and cancers works. They’ve aided in the development of in vitro fertilization and gene mapping. They’ve been exposed to chemotherapy, massive doses of radiation and fevers that killed American troops abroad. They even rode into the zero gravity of space on early shuttle missions—all to gauge how such things might affect humans.
“They’re part of so many scientific landmarks, from helping scientists get a basic understanding of how a cell works to cloning,” says Rebecca Skloot, a science reporter and author of the just-released The Immortal Life of Henrietta Lacks. “It’s inconceivable to think about all the advances her cells were a part of.”
Today, trillions upon trillions of HeLa cells—descendents of the originals from Henrietta Lacks—are still helping scientists unlock secrets to medical mysteries. Their monetary value, Skloot says, is absolutely incalculable. “And I’ve tried to count,” she says.
When Skloot first heard the story of the cells in her high school biology class in 1988, she couldn’t figure out why no one knew anything about the woman they came from—not even her correct name. Years later in graduate school, Skloot decided to find out more about the mysterious donor, and set out to convince the Lacks family to tell their story.
She found a family mired in poverty, often unable to afford health care, and hesitant to talk to a reporter searching for information about Henrietta or their own lives. But gradually throughout her decade of research, Skloot learned about Henrietta, the woman: the daughter of a tobacco farmer, raised by her grandfather in a log cabin in rural Virginia; a brave wife who got on a train to Baltimore where her husband’s job in a steel plant promised a better life; a kindhearted friend who loved to dance and play bingo. According to Henrietta’s cousin, Sadie, “she was a person that could really make the good things come out of you.” Skloot also persuaded Henrietta’s younger daughter, Deborah, to join her on a journey to learn what happened to Henrietta Lacks, her immortal cells’ extraordinary contribution to science and the current controversies they started. (Read an excerpt here.)
Rebecca Skloot talked to the AARP Bulletin about her book.
Q. Why were these particular cells so indestructible?
A. No one knows. They’re very hearty and hard to kill. Scientists used to joke you could grow them in a sink drain or on a doorknob.
Q. Doctors never told Henrietta, or her family, they were taking a sample. Why not?
A. Look at the mind frame in 1950. Consent wasn’t required to do really anything to anyone. People were being injected with radioactive materials. Rather than treating people for syphilis, doctors were studying their patients to see how they died. Taking cells from a person wasn’t even on their radar as something that might be objectionable.
Q. The Lacks family didn’t know anything about these cells for 25 years.
A. Yes, some scientists decided to track down Henrietta’s family because they thought research on her relatives would teach more about HeLa cells and Henrietta’s DNA. A postdoctoral researcher ended up calling Henrietta’s husband.
Q. And her English wasn’t very clear, right?
A. She had come to the U.S. recently from China, had a pretty thick accent and didn’t know that Mr. Lacks didn’t know about the cells. Mr. Lacks understood the phone call like this: “We’ve got your wife, she’s lying in a laboratory for the past 25 years and now we need to test your kids to see if they have cancer,” which wasn’t what she said at all. Neither understood what the other was saying. But Mr. Lacks called his kids and told them to give blood.
Q. The family was never compensated for anything—their blood, their mother’s prolific cells.
A. That became an enormous issue for the family. They didn’t pay that much attention to it until they read in an article that the HeLa cells were selling for a certain amount per vial and that really got them angry. Money had been a struggle for them their whole lives.
Q. In taking Henrietta’s cells, was an element of discrimination at work?
A. It’s hard to say. If Henrietta had been white and wealthy, would this have happened? Doctors were trying to figure out what cervical cancer was and were taking samples from pretty much anyone who came into Hopkins with cervical cancer. They weren’t just looking at black women.
Q. But Henrietta was also poor and uneducated.
A. Yes, those were the people who usually ended up in the public wards at Hopkins where the study was being done. This was a charity hospital, so you can’t take out the factors of race and class because a white woman with money probably wouldn’t have gone there in the first place. We just don’t know.
Q. Could doctors take cells from you or me today without our consent?
A. Absolutely. Doctors often keep tissues from patients who’ve had a mole removed or a tonsillectomy or any number of routine procedures; most Americans have their tissues on file somewhere. It’s been mandatory for any child born after the early ’60s to test for genetic disorders, and those samples are often kept and stored for future research.
Q. Are patients aware of this?
A. People are starting to find out what’s happening, and it’s becoming a big issue. In Texas, a group of parents sued because their children’s samples were stored and were being used for research. A few weeks ago, the court ordered those samples destroyed.
Q. Wouldn’t most people be glad to contribute to the collective body of scientific knowledge?
A. A lot of people think using their cells in culture is just great. One scientist I heard from posted a note on the Virology blog that said, “You’re kidding! These are cells that are totally disembodied from the person. How could anyone have a problem with this?”
But there are others who say, “That’s part of me and it has my DNA in it and you didn’t ask.” So there are legitimate concerns on both sides. When I talk to people who have lawsuits over cells, it often comes down to “if they had asked me, I would have been fine with it.”
Q. Deborah, Henrietta’s younger daughter, felt very tied to the HeLa cells.
A. She was traumatized by not having a mother. So much of this story is about her emotional attachment to the cells and her belief that this is part of her mother that is alive. Could she get to know her this way? Could she see her somehow?
Q. Couldn’t doctors ask for patients’ consent to take cell samples?
A. That’s been a very thorny issue for science since the late ’60s and early ’70s. For scientists, it’s a nightmare.
A. Right now, millions and millions of samples stored in tissue banks, in some guy’s basement lab, in hospitals, in a small town in Iowa—they’re all being used for research. You can’t go back and get permission for all this. So what are you going to do? Destroy them all? That would be horrific for science. And that would cause financial and all kinds of damage for research.
Q. If all the human tissue that’s used in research were destroyed, what wouldn’t we have?
A. Vaccines for measles, mumps, rubella, rabies, for sure. A lot of drugs. They’d start growing new cell lines, but some existing ones are particularly useful for this stuff. One line from an aborted fetus—and the mother certainly didn’t know the cells were taken—is used to grow a majority of our vaccines because it has particular properties. It’s inconceivable to think about what research studies would have to stop.
Q. Couldn’t we just grow more cell cultures with tissue from people who give consent?
A. Who knows how long it would take to find a valuable, important cell line like HeLa? There are tons of cells that will grow now, but not many of them are particularly valuable.
Q. Other issues of consent appear in the book. What happened to Elsie, Henrietta’s older daughter?
A. When she was 14 or 15, she was institutionalized when Henrietta’s fifth child was born, which was also the year Henrietta was diagnosed with cancer.
Q. So Henrietta’s doctors convinced her and her husband that the best thing to do was send Elsie to a mental institution in Crownsville, Md.
A. Yes, it was originally called the Hospital for the Negro Insane, for any black person with syphilis, epilepsy or a variety of conditions considered insane.
Q. What was wrong with Elsie?
A. It’s very hard to know because it was never discussed. Deborah always thought she was deaf because all the Lacks children have some level of hearing loss. Elsie was epileptic—she had seizures, and Henrietta could no longer handle her—and was born with syphilis. Her parents were first cousins so she also could have been born with mental problems. No one knows because no one ever communicated with her. Henrietta visited her once a week. Elsie would cry and cling to her.
Q. You and Deborah learned what happened there.
A. It was horrific. Patients were crammed together, children were mixed with adults, girls with boys. Children were used for research without their parents’ permission. This included doctors probing their brains during epileptic seizures to figure out what was going on. It was unthinkably painful and awful. We didn’t expect to learn this at all.
Q. How did Deborah react?
A. That moment when we discovered what was actually done to Elsie was so shocking and traumatic. Deborah knew something had happened to her sister, but no one had ever talked about it, just like no one ever talked about her mother.
Q. But at least in her mother’s case, she learned that no one hurt her mother.
A. Deborah suspected that doctors had given her mother cancer because they knew her body would create these valuable cells. She learned that wasn’t true. When I was helping her learn about the HeLa, she would say that if she had studied this stuff, it wouldn’t have been as traumatizing.
Q. And you had a lot of fun learning about Henrietta Lacks.
A. Deborah is so funny! And lively, and a beautiful character. During these years of research, there was all this sadness, but also moments that were just delightful, listening to the family stories.
Carol Kaufmann is a contributing editor at the AARP Bulletin.
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