
Nearly 60 years ago, a beautiful African-American woman died of aggressive cervical cancer at Johns Hopkins Hospital in Baltimore.
Her name was Henrietta Lacks, and she was just 31. She left behind five children. She also left behind some of her cancer cells, which were taken to a Johns Hopkins laboratory run by George Gey, who had grown up in Pittsburgh.
Dr. Gey had been on a 30-year quest to grow human cancer cells in the lab to promote research into curing malignancies, but no matter how he tried to improve their care and feeding, the cells always seemed to die out quickly.
Not Mrs. Lacks' cells, though.
Dubbed HeLa, for the first two letters of her names, these cancer cells grew, and grew, and grew, becoming the world's most successful and widely used cancer cell line.
The story of those cells and of the Lacks family, many of whom never had steady health insurance despite their mother's contribution to science, is told in a new book, "The Immortal Life of Henrietta Lacks," by Rebecca Skloot, a graduate of the University of Pittsburgh's master's program in nonfiction writing.
It took Ms. Skloot 10 years to write the book, which was released Tuesday and already has been excerpted in Oprah Winfrey's magazine, O, and featured on ABC World News.
The 37-year-old author, who now teaches at the University of Memphis, did much of her research while living here. She said recently that "I wouldn't trade those 10 years for anything because there is no way I could have understood the story if it hadn't taken me that long."
After Dr. Gey discovered what a miracle he had growing in his petri dishes, she wrote, he began giving HeLa cells away to scientists all over the world. The cells soon assumed a central role in biomedical research.
They were used to help develop Jonas Salk's polio vaccine. They were employed during the Cold War to test radiation exposure on human cells. They were fired into orbit to examine the effect of weightlessness on biological processes.
And they are still used today.
HeLa cells, which are infected with one strain of the human papillomavirus, helped in the formulation of Gardasil, Merck's cervical cancer vaccine.
John Lazo, director of the University of Pittsburgh's Drug Discovery Institute, said he has worked with HeLa cells for 20 years and has published two dozen papers in which they played a critical role.
"In fact, I use them much more today than I did in the previous decade."
HeLa cells are still valuable today for testing various anticancer compounds. He called them "well-behaved" -- they grow at a predictable rate in flat layers that make them easy to see under a microscope.
"If you are interested in looking for a drug that will prevent protein A from interacting with protein B, you can easily see the interaction in HeLa cells," he said. "In probably half the pictures we show to the public, we use HeLa cells."
They also can be used for research that would seem to have little to do with cancer, Dr. Lazo said. Not only do the HeLa cells share many common biological properties with noncancerous cells, but they can be tweaked with genetic engineering to act more like other types of cells, such as heart cells or neurons.
For all their value -- HeLa cells have brought in millions of dollars over the years and a standard vial of them sells for more than $250 -- neither the Lacks family nor Johns Hopkins has received a penny. For many years, Henrietta Lacks' relatives did not even know that her cells were thriving all over the globe.
When they did find out, Ms. Skloot discovered, they were both enormously proud of her achievement and angry. As reports about HeLa cells filtered through to them, they sometimes believed even the strangest rumors about what had been done with them.
Deborah Lacks, Henrietta's daughter, who died last year, once searched for her mother's name on the Web using the terms "cloning" and "human farming" and saw thousands of entries. Then she saw a statement in a British online chat room that said "Each [HeLa cell] contains a genetic blueprint for constructing Henrietta Lacks. ... Can we clone her?"
Ms. Skloot writes about what happened next:
"One day, around three o'clock in the morning, my phone rang ... Deborah yelled on the other end, 'I told you London cloned my mother!'
... She thought those thousands of hits were proof that scientists had cloned thousands of Henriettas.
'They didn't clone her,' I said. 'They just made copies of her cells. I promise.'
And then Deborah, who was only a baby when her mother died, said, 'But if they cloned her cells, does that mean they could clone my mother?' "
No, Ms. Skloot told her, and then wished her a good night.
While Deborah Lacks was honored that her mother's cells seemed to have helped so many people, her brothers were often angry that the family had been kept in the dark and denied any money from later discoveries.
"One of the first things the Lacks men asked me when I contacted them was, 'So what are you going to pay us,'? Ms. Skloot recalled. " 'Or are you going to be one of those people who goes off and makes money from us?' I told them I couldn't pay them anything. Besides the whole issue of journalistic ethics, I said, 'I'm a grad student paying for my research with student loans and credit cards.' "
Now that the book is out, she and others have set up a foundation for scholarships for children in the Lacks family, www.HenriettaLacksFoundation.org.
Many Lacks grandchildren and great-grandchildren could benefit, she said, and if enough money comes in, "my hope is that something really big will happen, like maybe someday being able to help African-American women who want to study science."
One of the emotional breakthroughs for the Lacks family came in 2001, when young Austrian researcher Christoph Lengauer invited them to his lab at Johns Hopkins to look at their mother's cells for the first time.
In this excerpt, Ms. Skloot describes how Dr. Lengauer, who now heads cancer research for drug company sanofi-aventis, welcomed Deborah Lacks and her brother, Zakariyya, then opened a floor-to-ceiling freezer.
"'It's all full of her cells,' he said.
Deborah loosened her grip on Zakariyya and inched forward until the icy breeze hit her face, and she stood staring at thousands of inch-tall plastic vials filled with red liquid.
'Oh, God,' she gasped. 'I can't believe that's all my mother.' Zakariyya just stared in silence."
Those cells were the offspring of a mass production effort that began half a century earlier.
In 1952, Dr. Gey and other scientists discovered that HeLa cells were extremely susceptible to being infected by the polio virus, and knew they would make a good test culture for the vaccine being developed by Jonas Salk at the University of Pittsburgh.
Using money from the National Foundation for Infantile Paralysis, they set up a mass production unit for HeLa cells at the Tuskegee Institute, one of the nation's premier black universities.
Researchers then tested the effectiveness of the polio vaccine by mixing HeLa cells with the polio virus and blood serum from someone who had been inoculated. If the HeLa cells didn't become infected, they knew that batch of vaccine had worked.
The techniques used to grow HeLa cells in the lab were soon adapted by scientists to culture other types of human cell lines -- or at least that's what they thought until a bombshell exploded in their midst in 1966.
In that year, Ms. Skloot wrote, a researcher named Stanley Gartler announced at a major scientific conference in Bedford, in south central Pennsylvania, that HeLa cells apparently had contaminated at least 18 other human tissue cultures that scientists had thought were unique.
Many of the scientists insisted Mr. Gartler had to be wrong, Ms. Skloot wrote. But later, the research community acknowledged that HeLa cells were so virulent that they could spread to other cells in a lab simply by hitching a ride on the outside of coat sleeves or test tubes.
Even today, with modern lab equipment, scientists have to be cautious about HeLa contamination, Pitt's Dr. Lazo noted.
As medical research using HeLa moves forward, Roland Pattillo, who is an adviser to the Henrietta Lacks Foundation and a gynecological surgery professor at the Morehouse School of Medicine in Atlanta, said there are still complicated ethical issues to resolve with the Lacks family and society as a whole.
"Clearly the Lacks family, as they greatly praise the result of their mom's contribution to science, is nevertheless a poor family without much health insurance themselves. So more than just respecting and praising the family members' contribution, society ought to find some resolution" to what they might be owed from all the money generated by HeLa research.
Ruth Faden, executive director of the Johns Hopkins Berman Institute of Bioethics, said most hospitals now ask consent from patients before they donate tissue or have it surgically removed.
The forms used at UPMC are one typical approach. They ask patients to acknowledge that their tissue may be used for medical research, and that they will be asked to authorize that research only if "my identity is linked to the specimens/tissue."
Other hospitals are much more detailed, she said, and ask patients to designate on a checklist which kinds of research their tissue can be used for.
But no one has adopted a standard approach for what happens if a patient's tissues or cells lead to a commercially successful product, Dr. Faden said.
Some scientists believe that paying people for tissue donations will inhibit scientific research, and that donations should be seen as an altruistic gift.
But others believe that only allows doctors, drug companies and others to reap all the profits that come from new biomedical products, and that the people who provided the original tissue should share in that wealth.
Today, she said, "there is no consensus on whether I as a patient am owed some control over the sample in terms of its distribution or compensation from any money earned from the sample."
A lot of people are working on solutions to that problem, she said.
One intriguing possibility is that in return for people freely donating their tissue, America would have a health care system that guaranteed everyone access to the drugs and treatments that are developed from those specimens, she said.
These broad ethical issues were not what pulled at Deborah Lacks' heart most of the time, though, Ms. Skloot writes.
In 1996, she was invited by Morehouse's Dr. Pattillo to speak at a conference he organized in her mother's memory. After she had taken the podium and talked to the audience, Ms. Lacks suddenly began to address her departed mother directly:
"We miss you, Mama. ... I think of you all the time and wish I could see you and hold you in my arms, like I know you held me. My father said that you told him on your dying bed to take care of Deborah. Thank you, Ma, we will see you again someday. ... I keep with me all I know about you deep in my soul, because I am part of you, and you are me. We love you, Mama."
Doug Oster writes a blog, "Growing With Doug," exclusively at PG+, a members-only web site of the Pittsburgh Post-Gazette. Our introduction to PG+ gives you all the details.