THIS FIRST: the HAYFLICK LIMIT
http://www.mpib-berlin.mpg.de/en/aktuelles/hayflick.htm
http://en.wikipedia.org/wiki/Hayflick_limit
“…is the number of times a normal cell population will divide before it stops, presumably because the telomeres reach a critical length…”

A PERPLEXING DEATHLESSNESS
http://rebeccaskloot.com/book-special-features/audiovideo/
http://www.smithsonianmag.com/science-nature/Henrietta-Lacks-Immortal-Cells.html
Henrietta Lacks’ ‘Immortal’ Cells
by Sarah Zielinski / January 22, 2010

Medical researchers use laboratory-grown human cells to learn the intricacies of how cells work and test theories about the causes and treatment of diseases. The cell lines they need are “immortal”—they can grow indefinitely, be frozen for decades, divided into different batches and shared among scientists. In 1951, a scientist at Johns Hopkins Hospital in Baltimore, Maryland, created the first immortal human cell line with a tissue sample taken from a young black woman with cervical cancer. Those cells, called HeLa cells, quickly became invaluable to medical research—though their donor remained a mystery for decades. In her new book, The Immortal Life of Henrietta Lacks, journalist Rebecca Skloot tracks down the story of the source of the amazing HeLa cells, Henrietta Lacks, and documents the cell line’s impact on both modern medicine and the Lacks family.

Q: Who was Henrietta Lacks?
A: She was a black tobacco farmer from southern Virginia who got cervical cancer when she was 30. A doctor at Johns Hopkins took a piece of her tumor without telling her and sent it down the hall to scientists there who had been trying to grow tissues in culture for decades without success. No one knows why, but her cells never died.

Q: Why are her cells so important?
A: Henrietta’s cells were the first immortal human cells ever grown in culture. They were essential to developing the polio vaccine. They went up in the first space missions to see what would happen to cells in zero gravity. Many scientific landmarks since then have used her cells, including cloning, gene mapping and in vitro fertilization.

Q: There has been a lot of confusion over the years about the source of HeLa cells. Why?
A: When the cells were taken, they were given the code name HeLa, for the first two letters in Henrietta and Lacks. Today, anonymizing samples is a very important part of doing research on cells. But that wasn’t something doctors worried about much in the 1950s, so they weren’t terribly careful about her identity. When some members of the press got close to finding Henrietta’s family, the researcher who’d grown the cells made up a pseudonym—Helen Lane—to throw the media off track. Other pseudonyms, like Helen Larsen, eventually showed up, too. Her real name didn’t really leak out into the world until the 1970s.

Q: How did you first get interested in this story?
A: I first learned about Henrietta in 1988. I was 16 and a student in a community college biology class. Everybody learns about these cells in basic biology, but what was unique about my situation was that my teacher actually knew Henrietta’s real name and that she was black. But that’s all he knew. The moment I heard about her, I became obsessed: Did she have any kids? What do they think about part of their mother being alive all these years after she died? Years later, when I started being interested in writing, one of the first stories I imagined myself writing was hers. But it wasn’t until I went to grad school that I thought about trying to track down her family.

Q: How did you win the trust of Henrietta’s family?
A: Part of it was that I just wouldn’t go away and was determined to tell the story. It took almost a year even to convince Henrietta’s daughter, Deborah, to talk to me. I knew she was desperate to learn about her mother. So when I started doing my own research, I’d tell her everything I found. I went down to Clover, Virginia, where Henrietta was raised, and tracked down her cousins, then called Deborah and left these stories about Henrietta on her voice mail. Because part of what I was trying to convey to her was I wasn’t hiding anything, that we could learn about her mother together. After a year, finally she said, fine, let’s do this thing.

Q: When did her family find out about Henrietta’s cells?
A: Twenty-five years after Henrietta died, a scientist discovered that many cell cultures thought to be from other tissue types, including breast and prostate cells, were in fact HeLa cells. It turned out that HeLa cells could float on dust particles in the air and travel on unwashed hands and contaminate other cultures. It became an enormous controversy. In the midst of that, one group of scientists tracked down Henrietta’s relatives to take some samples with hopes that they could use the family’s DNA to make a map of Henrietta’s genes so they could tell which cell cultures were HeLa and which weren’t, to begin straightening out the contamination problem. So a postdoc called Henrietta’s husband one day. But he had a third-grade education and didn’t even know what a cell was. The way he understood the phone call was: “We’ve got your wife. She’s alive in a laboratory. We’ve been doing research on her for the last 25 years. And now we have to test your kids to see if they have cancer.” Which wasn’t what the researcher said at all. The scientists didn’t know that the family didn’t understand. From that point on, though, the family got sucked into this world of research they didn’t understand, and the cells, in a sense, took over their lives.

Q: How did they do that?
A: This was most true for Henrietta’s daughter. Deborah never knew her mother; she was an infant when Henrietta died. She had always wanted to know who her mother was but no one ever talked about Henrietta. So when Deborah found out that this part of her mother was still alive she became desperate to understand what that meant: Did it hurt her mother when scientists injected her cells with viruses and toxins? Had scientists cloned her mother? And could those cells help scientists tell her about her mother, like what her favorite color was and if she liked to dance. Deborah’s brothers, though, didn’t think much about the cells until they found out there was money involved. HeLa cells were the first human biological materials ever bought and sold, which helped launch a multi-billion-dollar industry. When Deborah’s brothers found out that people were selling vials of their mother’s cells, and that the family didn’t get any of the resulting money, they got very angry. Henrietta’s family has lived in poverty most of their lives, and many of them can’t afford health insurance. One of her sons was homeless and living on the streets of Baltimore. So the family launched a campaign to get some of what they felt they were owed financially. It consumed their lives in that way.

Q: What are the lessons from this book?
A: For scientists, one of the lessons is that there are human beings behind every biological sample used in the laboratory. So much of science today revolves around using human biological tissue of some kind. For scientists, cells are often just like tubes or fruit flies—they’re just inanimate tools that are always there in the lab. The people behind those samples often have their own thoughts and feelings about what should happen to their tissues, but they’re usually left out of the equation.

Q: And for the rest of us?
A: The story of HeLa cells and what happened with Henrietta has often been held up as an example of a racist white scientist doing something malicious to a black woman. But that’s not accurate. The real story is much more subtle and complicated. What is very true about science is that there are human beings behind it and sometimes even with the best of intentions things go wrong. One of the things I don’t want people to take from the story is the idea that tissue culture is bad. So much of medicine today depends on tissue culture. HIV tests, many basic drugs, all of our vaccines—we would have none of that if it wasn’t for scientists collecting cells from people and growing them. And the need for these cells is going to get greater, not less. Instead of saying we don’t want that to happen, we just need to look at how it can happen in a way that everyone is OK with.

CONTACT
Rebecca Skloot
http://scienceblogs.com/culturedish/
http://rebeccaskloot.com/about/bio/
email: rebecca [at] rebeccaskloot [dot] com

BEFORE CONSENT
http://en.wikipedia.org/wiki/George_Otto_Gey
http://www.medicalarchives.jhmi.edu/sgml/gey.html
http://www.nytimes.com/2001/11/17/arts/cells-that-save-lives-are-a-mother-s-legacy.html
Cells That Save Lives Are a Mother’s Legacy
by Rebecca Skllot / November 17, 2001

Deborah Lacks closed her eyes as a young cancer researcher opened the door of his floor-to-ceiling freezer. She stood clutching the ragged dictionary she uses to look up words like ”DNA,” ”cell” and ”immortality.” When the icy breeze hit her face, she opened her eyes slowly, and stared into a freezer filled with tiny vials of red liquid. ”O God,” she gasped, ”I can’t believe all this is my mother.” Fifty years ago, when Deborah Lacks was still in diapers, her 30-year-old mother, Henrietta Lacks, lay in a segregated ward of Johns Hopkins Hospital in Baltimore. The resident gynecologist sewed radium to her cervix in an attempt to knock out the cancer that was killing her. But before he finished, and without telling her, he took a small sample of her tumor and sent it downstairs to Dr. George Gey (pronounced guy), head of tissue culture research at Hopkins. Dr. Gey had spent almost 30 years collecting cancerous human cells and trying to make them grow, but until Ms. Lacks came along, they never did. Though Henrietta died a few months after her radium treatments, her cells are still living today.

Henrietta’s cells — named HeLa after the first letters in Henrietta and Lacks — became the first human cells to live indefinitely outside the body. They helped eradicate polio, flew in early space shuttle missions and sat in nuclear test sites around the world. In the 50’s, HeLa cells helped researchers understand the differences between cancerous and normal cells, and quickly became a standard laboratory tool for studying the effects of radiation, growing viruses and testing medications. HeLa is still one of the most widely used cell lines; in fact, this year’s Nobel Prize in Physiology or Medicine was awarded for research in which HeLa cells played a pivotal role. Yet it was not until nearly two decades later — just before magazines like Jet and Emerge started writing stories about a black family whose mother had made important contributions to science without their knowledge — that anyone in Ms. Lacks’s family knew what had happened. Ms. Lacks, 52, doesn’t remember how she heard, but she’ll never forget her reaction: ”I went into shock,” she said. ”Why didn’t they just ask if they could use her cells?”

If the issue of using patient tissue without permission wasn’t a pressing one in the 50’s, informed consent has certainly become a heated topic today. ”In 1951, they wouldn’t have felt like they needed to ask,” said Ruth Faden, executive director of the Johns Hopkins Bioethics Institute. ”It’s a sad commentary on how the biomedical research community thought about research in the 50’s, but it was not at all uncommon for physicians to conduct research on patients without their knowledge or consent.” Today, when patients go in for surgery, they’re usually asked to sign a form saying whether their tissues can be used for research. But, said Lori Andrews, a professor at Chicago-Kent College of Law and co-author of ”Body Bazaar: The Market for Human Tissue in the Biotechnology Age,” that practice doesn’t solve an important problem. ”All of us have blood or tissue on file somewhere,” Ms. Andrews said. ”Today, every drop of blood taken from people, every organ or biopsy removed by a surgeon, is in the pipeline toward research and commercialization. Since the 60’s, every newborn in the U.S. has been tested for genetic disorders, and many of their samples are still on file for use in later research. There are no rules governing who has access to these samples.” Some bioethicists and lawyers want legislation requiring researchers to obtain consent before conducting research on any tissues, including those already in storage. But many research organizations — the American Society for Investigative Pathology, for example, and the College of American Pathologists — have argued that such blanket legislation could seriously damage scientific progress.

Dr. Mark Sobel, senior executive officer of the American Society for Investigative Pathology, agrees that informed consent should be required before new tissues are collected. But to Dr. Sobel, the millions of tissue samples collected before the current shift toward informed consent, like Henrietta Lacks’s cells, are a special case. Scientists conducting research on those samples have no way to contact the donors for permission. ”This is where we want some flexibility,” Dr. Sobel said. ”We want recognition that there’s a way — with policies in place for confidentiality and protecting the patients — that you can still use these very, very, very important resources of human tissue. Otherwise, it’s going to impede medical research.” To Dr. Sobel, using these samples ethically means protecting patient identity and assuring complete anonymity. Dr. Gey tried to do this for Ms. Lacks, but rumors began circulating that HeLa stood for someone named Helen Lane. When a few colleagues of Dr. Gey, who has since died, tried to correct this error, the Lacks family was thrown into a world of science they didn’t understand.

Ever since Ms. Lacks first heard about her mother’s cells, she has been trying to understand how they could be alive decades after her death. So she got a notebook, a dictionary and a science book and began teaching herself about cells, one word at a time. ”A cell,” she wrote, ”is a minute portion of living substance.” She copied one definition after another. ”As long as the cell receives an adequate supply of food,” she wrote, ”it will continue to grow and thrive for the duration of its life cycle.” Not even Dr. Gey ever understood precisely why the life cycle of Ms. Lacks’s cancer cells has continued indefinitely.

Within a few years of learning about HeLa cells, the Lacks family began getting letters from researchers, asking them to donate blood so scientists could find genetic markers to help identify Henrietta’s cells. But Ms. Lacks remembers differently: ”It was a typed letter, stating we need samples of the Lacks family to check her blood cells with theirs, to see if anybody has the same thing that she had,” she said. Ms. Lacks was in her late 20’s and had always worried that she might die at 31, just like her mother. ”I cried and cried,” she recalled. ”I had my two children, they was babies at the time, and I said ‘O God, am I going to make it past 31?’ ” She dodged the researchers at first, because she didn’t want to know whether she had cancer. When she finally decided to take the tests, she thought she’d get a phone call telling her whether she was going to live or die. She never heard back from the researchers and soon had the first of what would become several breakdowns.

Ms. Faden said: ”This could have been a very innocent misunderstanding. But this is why researchers have to be as straightforward as possible, because the expectation is that when a doctor wants to do something to you, it’s for your benefit. Physician-researchers need to make this clear by saying, ‘I’m not doing this to help you, I’m doing it to advance science.’ ” Bobbette Lacks, Henrietta Lacks’s daughter-in-law, says that if researchers had told them about HeLa cells, then informed them of future research, her family would have cooperated. But not now. ”I would never subject my kids to that,” Bobbette Lacks said. This year, the 50th anniversary of Henrietta Lacks’s death, some scientists wanted to honor her contribution. The National Foundation for Cancer Research had invited Deborah Lacks onstage to thank her for her mother’s cells. But the conference had been scheduled for Sept. 13 and was canceled after the terrorist attacks. So for now, Ms. Lacks is back to learning about her mother on her own. Until Ms. Lacks looked into that freezer filled with vials earlier this year, she had only read about her mother’s cells; she had never seen them. Christoph Lengauer, the young cancer researcher who was showing her around his lab at John Hopkins Oncology Center, leaned over a microscope, focused it on a single HeLa cell and projected it onto a monitor. She stared in silence, eyes wide, then sighed. ”I was doing a little bit of studying on that DNA in my books,” she said, patting her purse filled with notes. Now she is in the process of signing up for basic courses at a local community center in Baltimore in the hope that they will lead her toward college. She is not sure what degree she will pursue, but she knows for sure what she will study: science.

ENDLESS SUPPLY
http://www.popsci.com/science/article/2010-01/five-reasons-henrietta-lacks-most-important-woman-medical-history

In 1951, Henrietta Lacks, a poor woman with a middle-school education, made one of the greatest medical contributions ever. Her cells, taken from a cervical-cancer biopsy, became the first immortal human cell line—the cells reproduce infinitely in a lab. Although other immortal lines have since been established, Lacks’s “HeLa” cells are the standard in labs around the world. Together they outweigh 100 Empire State Buildings and could circle the equator three times. This month, PopSci contributor Rebecca Skloot’s book, The Immortal Life of Henrietta Lacks, tells the story behind the woman who revolutionized modern medicine. Here, five reasons we should all thank Henrietta Lacks:
1. Before HeLa cells, scientists spent more time trying to keep cells alive than performing actual research on the cells. An endless supply of HeLa cells freed up time for discovery.
2. In 1952, the worst year of the polio epidemic, HeLa cells were used to test the vaccine that protected millions.
3. Some cells in Lacks’s tissue sample behaved differently than others. Scientists learned to isolate one specific cell, multiply it, and start a cell line. Isolating one cell and keeping it alive is the basic technique for cloning and in-vitro fertilization.
4. A scientist accidentally poured a chemical on a HeLa cell that spread out its tangled chromosomes. Later on, scientists used this technique to determine that humans have 46 chromosomes—23 pairs—not 48, which provided the basis for making several types of genetic diagnoses.
5. It was discovered that Lacks’s cancerous cells used an enzyme called telomerase to repair their DNA, allowing them, and other types of cancer cells, to function when normal cells would have died. Anti-cancer drugs that work against this enzyme are currently in early clinical trials.


HeLa isn’t the only cell line in use today. Thousands have found their way into labs worldwide. Above are some commonly used lines and the number of scientific papers they appear in.

AVAILABLE IN BULK
http://www.atcc.org/
http://www.biocompare.com/ProductListings/18758/HeLa-Cells.html
http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/C/CancerCellsInCulture.html
http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/M/Media.html#Ham’s_Medium
http://ems3.intellor.com/index.cgi?c=105&t=13&s=corningweb
http://ems3.intellor.com/index.cgi?c=105&t=13&s=corningweb

Hela
http://www.npr.org/templates/story/story.php?storyId=123232331
excerpt from ‘The Immortal Life of Henrietta Lacks’
by Rebecca Skloot / 2010

There’s a photo on my wall of a woman I’ve never met, its left corner torn and patched together with tape. She looks straight into the camera and smiles, hands on hips, dress suit neatly pressed, lips painted deep red. It’s the late 1940s and she hasn’t yet reached the age of thirty. Her light brown skin is smooth, her eyes still young and playful, oblivious to the tumor growing inside her — a tumor that would leave her five children motherless and change the future of medicine. Beneath the photo, a caption says her name is “Henrietta Lacks, Helen Lane or Helen Larson.” No one knows who took that picture, but it’s appeared hundreds of times in magazines and science textbooks, on blogs and laboratory walls. She’s usually identified as Helen Lane, but often she has no name at all. She’s simply called HeLa, the code name given to the world’s first immortal human cells — her cells, cut from her cervix just months before she died. Her real name is Henrietta Lacks.

I’ve spent years staring at that photo, wondering what kind of life she led, what happened to her children, and what she’d think about cells from her cervix living on forever —bought, sold, packaged, and shipped by the trillions to laboratories around the world. I’ve tried to imagine how she’d feel knowing that her cells went up in the first space missions to see what would happen to human cells in zero gravity, or that they helped with some of the most important advances in medicine: the polio vaccine, chemotherapy, cloning, gene mapping, in vitro fertilization. I’m pretty sure that she — like most of us — would be shocked to hear that there are trillions more of her cells growing in laboratories now than there ever were in her body.

There’s no way of knowing exactly how many of Henrietta’s cells are alive today. One scientist estimates that if you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons — an inconceivable number, given that an individual cell weighs almost nothing. Another scientist calculated that if you could lay all HeLa cells ever grown end-to-end, they’d wrap around the Earth at least three times, spanning more than 350 million feet. In her prime, Henrietta herself stood only a bit over five feet tall.

I first learned about HeLa cells and the woman behind them in 1988, thirty-seven years after her death, when I was sixteen and sitting in a community college biology class. My instructor, Donald Defler, a gnomish balding man, paced at the front of the lecture hall and flipped on an overhead projector. He pointed to two diagrams that appeared on the wall behind him. They were schematics of the cell reproduction cycle, but to me they just looked like a neon-colored mess of arrows, squares, and circles with words I didn’t understand, like “MPF Triggering a Chain Reaction of Protein Activations.”

I was a kid who’d failed freshman year at the regular public high school because she never showed up. I’d transferred to an alternative school that offered dream studies instead of biology, so I was taking Defler’s class for high-school credit, which meant that I was sitting in a college lecture hall at sixteen with words like mitosis and kinase inhibitors flying around. I was completely lost. “Do we have to memorize everything on those diagrams?” one student yelled. Yes, Defler said, we had to memorize the diagrams, and yes, they’d be on the test, but that didn’t matter right then. What he wanted us to understand was that cells are amazing things: There are about one hundred trillion of them in our bodies, each so small that several thousand could fit on the period at the end of this sentence. They make up all our tissues — muscle, bone, blood — which in turn make up our organs.

Under the microscope, a cell looks a lot like a fried egg: It has a white (the cytoplasm) that’s full of water and proteins to keep it fed, and a yolk (the nucleus) that holds all the genetic information that makes you you. The cytoplasm buzzes like a New York City street. It’s crammed full of molecules and vessels endlessly shuttling enzymes and sugars from one part of the cell to another, pumping water, nutrients, and oxygen in and out of the cell. All the while, little cytoplasmic factories work 24/7, cranking out sugars, fats, proteins, and energy to keep the whole thing running and feed the nucleus. The nucleus is the brains of the operation; inside every nucleus within each cell in your body, there’s an identical copy of your entire genome. That genome tells cells when to grow and divide and makes sure they do their jobs, whether that’s controlling your heartbeat or helping your brain understand the words on this page.

Defler paced the front of the classroom telling us how mitosis — the process of cell division — makes it possible for embryos to grow into babies, and for our bodies to create new cells for healing wounds or replenishing blood we’ve lost. It was beautiful, he said, like a perfectly choreographed dance. All it takes is one small mistake anywhere in the division process for cells to start growing out of control, he told us. Just one enzyme misfiring, just one wrong protein activation, and you could have cancer. Mitosis goes haywire, which is how it spreads. “We learned that by studying cancer cells in culture,” Defler said. He grinned and spun to face the board, where he wrote two words in enormous print: HENRIETTA LACKS.

Henrietta died in 1951 from a vicious case of cervical cancer, he told us. But before she died, a surgeon took samples of her tumor and put them in a petri dish. Scientists had been trying to keep human cells alive in culture for decades, but they all eventually died. Henrietta’s were different: they reproduced an entire generation every twenty-four hours, and they never stopped. They became the first immortal human cells ever grown in a laboratory. “Henrietta’s cells have now been living outside her body far longer than they ever lived inside it,” Defler said. If we went to almost any cell culture lab in the world and opened its freezers, he told us, we’d probably find millions — if not billions — of Henrietta’s cells in small vials on ice.

Her cells were part of research into the genes that cause cancer and those that suppress it; they helped develop drugs for treating herpes, leukemia, influenza, hemophilia, and Parkinson’s disease; and they’ve been used to study lactose digestion, sexually transmitted diseases, appendicitis, human longevity, mosquito mating, and the negative cellular effects of working in sewers. Their chromosomes and proteins have been studied with such detail and precision that scientists know their every quirk. Like guinea pigs and mice, Henrietta’s cells have become the standard laboratory workhorse. “HeLa cells were one of the most important things that happened to medicine in the last hundred years,” Defler said.

Then, matter-of-factly, almost as an afterthought, he said, “She was a black woman.” He erased her name in one fast swipe and blew the chalk from his hands. Class was over. As the other students filed out of the room, I sat thinking, That’s it? That’s all we get? There has to be more to the story. I followed Defler to his office. “Where was she from?” I asked. “Did she know how important her cells were? Did she have any children?”

“I wish I could tell you,” he said, “but no one knows anything about her.” After class, I ran home and threw myself onto my bed with my biology textbook. I looked up “cell culture” in the index, and there she was, a small parenthetical: “In culture, cancer cells can go on dividing indefinitely, if they have a continual supply of nutrients, and thus are said to be “immortal.” A striking example is a cell line that has been reproducing in culture since 1951. (Cells of this line are called HeLa cells because their original source was a tumor removed from a woman named Henrietta Lacks.)” That was it. I looked up HeLa in my parents’ encyclopedia, then my dictionary: No Henrietta.

The Way of All Flesh, by Adam Curtis

As I graduated from high school and worked my way through college toward a biology degree, HeLa cells were omnipresent. I heard about them in histology, neurology, pathology; I used them in experiments on how neighboring cells communicate. But after Mr. Defler, no one mentioned Henrietta. When I got my first computer in the mid-nineties and started using the Internet, I searched for information about her, but found only confused snippets: most sites said her name was Helen Lane; some said she died in the thirties; others said the forties, fifties, or even sixties. Some said ovarian cancer killed her, others said breast or cervical cancer.

Eventually I tracked down a few magazine articles about her from the seventies. Ebony quoted Henrietta’s husband saying, “All I remember is that she had this disease, and right after she died they called me in the office wanting to get my permission to take a sample of some kind. I decided not to let them.” Jet said the family was angry — angry that Henrietta’s cells were being sold for twenty-five dollars a vial, and angry that articles had been published about the cells without their knowledge. It said, “Pounding in the back of their heads was a gnawing feeling that science and the press had taken advantage of them.”

The articles all ran photos of Henrietta’s family: her oldest son sitting at his dining room table in Baltimore, looking at a genetics textbook. Her middle son in military uniform, smiling and holding a baby. But one picture stood out more than any other: in it, Henrietta’s daughter, Deborah Lacks, is surrounded by family, everyone smiling, arms around each other, eyes bright and excited. Except Deborah. She stands in the foreground looking alone, almost as if someone pasted her into the photo after the fact. She’s twenty-six years old and beautiful, with short brown hair and catlike eyes. But those eyes glare at the camera, hard and serious. The caption said the family had found out just a few months earlier that Henrietta’s cells were still alive, yet at that point she’d been dead for twenty-five years.

All of the stories mentioned that scientists had begun doing research on Henrietta’s children, but the Lackses didn’t seem to know what that research was for. They said they were being tested to see if they had the cancer that killed Henrietta, but according to the reporters, scientists were studying the Lacks family to learn more about Henrietta’s cells. The stories quoted her son Lawrence, who wanted to know if the immortality of his mother’s cells meant that he might live forever too. But one member of the family remained voiceless: Henrietta’s daughter, Deborah.

As I worked my way through graduate school studying writing, I became fixated on the idea of someday telling Henrietta’s story. At one point I even called directory assistance in Baltimore looking for Henrietta’s husband, David Lacks, but he wasn’t listed. I had the idea that I’d write a book that was a biography of both the cells and the woman they came from — someone’s daughter, wife, and mother.

I couldn’t have imagined it then, but that phone call would mark the beginning of a decadelong adventure through scientific laboratories, hospitals, and mental institutions, with a cast of characters that would include Nobel laureates, grocery store clerks, convicted felons, and a professional con artist. While trying to make sense of the history of cell culture and the complicated ethical debate surrounding the use of human tissues in research, I’d be accused of conspiracy and slammed into a wall both physically and metaphorically, and I’d eventually find myself on the receiving end of something that looked a lot like an exorcism. I did eventually meet Deborah, who would turn out to be one of the strongest and most resilient women I’d ever known. We’d form a deep personal bond, and slowly, without realizing it, I’d become a character in her story, and she in mine.

Deborah and I came from very different cultures: I grew up white and agnostic in the Pacific Northwest, my roots half New York Jew and half Midwestern Protestant; Deborah was a deeply religious black Christian from the South. I tended to leave the room when religion came up in conversation because it made me uncomfortable; Deborah’s family tended toward preaching, faith healings, and sometimes voodoo. She grew up in a black neighborhood that was one of the poorest and most dangerous in the country; I grew up in a safe, quiet middle-class neighborhood in a predominantly white city and went to high school with a total of two black students. I was a science journalist who referred to all things supernatural as “woo-woo stuff”; Deborah believed Henrietta’s spirit lived on in her cells, controlling the life of anyone who crossed its paths. Including me.

“How else do you explain why your science teacher knew her real name when everyone else called her Helen Lane?” Deborah would say. “She was trying to get your attention.” This thinking would apply to everything in my life: when I married while writing this book, it was because Henrietta wanted someone to take care of me while I worked. When I divorced, it was because she’d decided he was getting in the way of the book. When an editor who insisted I take the Lacks family out of the book was injured in a mysterious accident, Deborah said that’s what happens when you piss Henrietta off.

The Lackses challenged everything I thought I knew about faith, science, journalism, and race. Ultimately, this book is the result. It’s not only the story of HeLa cells and Henrietta Lacks, but of Henrietta’s family — particularly Deborah — and their lifelong struggle to make peace with the existence of those cells, and the science that made them possible.

SOME JURASSIC PARK SHIT
http://rebeccaskloot.com/the-immortal-life/excerpt/
BY Rebecca Skloot / 2010

Deborah grabbed her bag off the floor, and dumped its contents onto the bed. “This is what I got about my mother,” she said. There were videotapes, a tattered English dictionary, a diary, a genetics textbook, many scientific journal articles, patent records, and unsent greeting cards, including several birthday and Mother’s Day cards she’d bought for Henrietta. While she sorted through the pile, as though she was saying something as everyday as It’s supposed to rain tomorrow, Deborah said, “Scientists do all kinds of experiments and you never know what they doin. I still wonder how many people they got in London walkin around look just like my mother.”

“What?” I said. “Why would there be women in London who look like your mother?” “They did that cloning on my mother over there,” she said, surprised I hadn’t come across that fact in my research. “A reporter came here from England talking about they cloned a sheep. Now you go on the Internet, they got stuff about cloning my mother all over.” She held up an article from the Independent in London and pointed at a circled paragraph: “Henrietta Lacks’s cells thrived. In weight, they now far surpassed the person of their origin and there would probably be more than sufficient to populate a village of Henriettas.” The writer joked that Henrietta should have put ten dollars in the bank in 1951, because if she had, her clones would be rich now. Deborah raised her eyebrows at me like, See? I told you!

I started saying it was just Henrietta’s cells scientists had cloned, not Henrietta herself. But Deborah waved her hand in my face, shushing me like I was talking nonsense, then grabbed a videocassette and held it up for me to see. It said Jurassic Park on the spine. “I saw this movie a bunch of times,” she said. “They talking about the genes and taking them from cells to bring that dinosaur back to life and I’m like, Oh Lord, I got a paper on how they were doin that with my mother’s cells too! “I don’t know what I’d do if I saw one of my mother clones walkin around somewhere.”

Deborah realized Jurassic Park was science fiction, but for her the line between sci-fi and reality had blurred years earlier, when her father got that first call saying Henrietta’s cells were still alive twenty-five years after her death. Deborah knew her mother’s cells had grown like the Blob until there were so many of them they could wrap around the Earth several times. It sounded crazy, but it was true. “You just never know,” Deborah said, fishing two more articles from the pile. One was called Human, Plant Cells Fused: Walking Carrots Next? The other was Man-Animal Cells Bred in Lab. Both were about her mother’s cells, and neither was science fiction. “I don’t know what they did,” Deborah said, “but it all sound like Jurassic Park to me.”


HeLa cells are cultured tumor cells isolated from cancer patient Henrietta Lacks in 1951. It is the first human cell to be kept in culture for long periods of time and is still used today.

CANCER DON’T STOP
http://m.discovermagazine.com/1992/dec/nolongerhuman171
by Lori Oliwenstein / December 1, 1992

Henrietta Lacks achieved a kind of immortality on February 9, 1951. On that day a sample of cancerous cells from her cervix was transferred to a culture dish, doused with nutrients, and left to grow. Lacks, a 30-year-old mother of four from Baltimore, had one of the most aggressive cervical cancers her doctors had ever seen, and the cells culled from her tumor grew avidly, doubling their number each day. Then they escaped. Small spills are always happening in laboratories; what distinguished Lacks’s cells was their ability to survive after they were somehow spilled. They were so hardy that if just one of them fell on a petri dish it would outgrow and overwhelm anything else living on that dish within a month.

Soon Henrietta Lacks’s cells were traveling from lab to lab, either deliberately sent–many cancer researchers had taken to using them in their experiments–or as an unseen contaminant tagging along in another cell line. Some researchers who thought they were looking at something completely different–a line of liver cells, say–ended up studying Henrietta Lacks’s cervical cells by accident. The cells even slipped through the iron curtain and into Russia.

Lacks died in October 1951, but her peripatetic cells lived on. Now some biologists are saying that those cells, called HeLa cells for short, have lost more than their connection to Henrietta Lacks. HeLa cells, these researchers claim, are no longer human at all: they are single-celled microbes–closely related to us, to be sure, but their own distinct species. How so, you ask? HeLa cells are not connected in any way to people, explains evolutionary biologist Leigh Van Valen of the University of Chicago. They have an extremely different ecological niche from us. They don’t mate with humans; they probably don’t even mate with human cells. They act just like a normal microbial species. They are evolving separately from us, and having a separate evolution is really what a species is all about.

The process of evolution is much the same for HeLas as it is for humans, although the former usually reproduce asexually, by cell division. As the cells divide, genetic mutations inevitably occur, and the ones that make the cells better adapted to their ecological niche–the petri dish– are preserved by natural selection. When Henrietta Lacks’s cells first became cancerous, they also acquired the ability to survive indefinitely in a culture medium; that massive genetic transformation made them substantially different from ordinary human cells, and after four decades of evolution they have become more different still. Different strains of HeLa cells, analogous to different races of human beings, have even developed in some of the geographically separated lines.

These little unicellular organisms have crossed oceans, spread their range, got into other cultures and outcompeted them, says Richard Strathmann, a marine biologist at the University of Washington’s Friday Harbor Laboratories who dabbles in evolutionary theory. They’re only different from other single-celled organisms in that a human being gave rise to them. Strathmann and Van Valen (the latter with his colleague Virginia Maiorana) put forth these ideas separately, in two papers in the same issue of the journal Evolutionary Theory, which Van Valen edits. (Both papers, he points out, were independently reviewed before publication.) Van Valen and Maiorana not only declared that HeLa may not be Homo sapiens, they gave the new species a name: Helacyton gartleri–Hela, after the HeLa cells themselves; cyton, from the Greek cytos, meaning cavity or cell; and gartleri after geneticist Stanley Gartler, who was the first to document the cells’ remarkable success.

While Van Valen is willing to name the new species, he is unwilling to suggest which higher taxonomic category it might fall into. Beyond the family name there are problems, he says. Since a HeLa cell can’t survive outside a culture medium, it obviously isn’t a primate in the usual sense. At the same time, says Van Valen, you can’t call it a protist- -a member of the kingdom of all single-celled organisms, which includes bacteria, protozoans, algae, and fungi–since that would mean that the same group had evolved twice, once sometime before 3.5 billion years ago and again today. It’s a fundamental tenet of evolutionary theory that evolution doesn’t repeat itself.

But that’s exactly what has happened, says Strathmann. And to him, HeLa cells are just a particularly aggressive and successful example of an evolutionary transition that has happened numerous times recently. Many cancer cells, in becoming cancerous, undergo the same type of genetic transformation that Henrietta Lacks’s cells did and thereby acquire the potential to be immortal; and many different lines of these cells are now surviving in petri dishes all over the world. All of them, according to Strathmann, have made the huge evolutionary leap from being metazoans– multicellular creatures with organs and tissues–to being single-celled protists. What’s most amazing, he says, is how fast they did it: it took nearly 3 billion years for the first metazoans to evolve after life originated but just a handful of years for HeLa and other cell lines to take exactly the same step in the other direction.

If this modern-day transition from human being to unicellular blob sounds like far-out fiction to you, you’re not alone. Some biologists consider the survival of HeLa cells a purely artificial phenomenon and argue that evolution in a petri dish has little relevance to evolution in nature. Indeed, Strathmann’s paper was rejected by other journals for just that reason before Van Valen agreed to publish it along with his own. Van Valen and Strathmann, of course, reject that criticism. The perception is that if human beings are manipulating the situation, it’s not natural, says Strathmann. But biomedical researchers are part of nature.

Organisms live in all sorts of odd places, including ones humans have created, adds Van Valen. Parks and cities are environments that we created, and organisms have become adapted to them. Human beings have even created new species before, albeit not from their own flesh. Modern corn, for instance, is a product of selective breeding by generations of farmers, and like HeLa cells, it can’t survive without human help. If HeLa had not been derived from human tissue, Van Valen says, there would be no question about its being a new species.

CONTACT
Leigh Van Valen
http://pondside.uchicago.edu/ecol-evol/people/vanvalen.html
email : leigh [at] uchicago [dot] edu

NEW SPECIES? HELACYTON GARTLERI
http://en.wikipedia.org/wiki/HeLa#Helacyton_gartleri

“Due to their ability to replicate indefinitely, and their non-human number of chromosomes, HeLa was described by Leigh Van Valen as an example of the contemporary creation of a new species, Helacyton gartleri, named after Stanley M. Gartler, whom Van Valen credits with discovering “the remarkable success of this species.” His argument for speciation depends on three points:

  • The chromosomal incompatibility of HeLa cells with humans.
  • The ecological niche of HeLa cells.
  • Their ability to persist and expand well beyond the desires of human cultivators.

It should be noted that this definition has not been followed by others in the scientific community, nor, indeed, has it been widely noted. As far as proposing a new species for HeLa cells, Van Valen proposes in the same paper the new family Helacytidae and the genus Helacyton.[12]Recognition of Van Valen and Maiorana’s names, however, renders Homo and Hominidae paraphyletic because Helacyton gartleri is most closely related to Homo sapiens.

‘LAB WEEDS’
http://en.wikipedia.org/wiki/Stanley_M._Gartler
http://en.wikipedia.org/wiki/Walter_Nelson-Rees
http://www.nature.com/nrc/journal/v2/n4/box/nrc775_BX1.html
http://www.sunypress.edu/p-133-a-conspiracy-of-cells.aspx
http://en.wikipedia.org/wiki/HeLa#Contamination
“Because of their adaptation to growth in tissue culture plates, HeLa cells are sometimes difficult to control. They have proven to be a persistent laboratory “weed” that contaminates other cell cultures in the same laboratory, interfering with biological research and forcing researchers to declare many results invalid. The degree of HeLa cell contamination among other cell types is unknown because few researchers test the identity or purity of already-established cell lines. It has been demonstrated that a substantial fraction of in vitro cell lines — approximately 10%, maybe 20% — are contaminated with HeLa cells. Stanley Gartler in 1967 and Walter Nelson-Rees in 1975 were the first to publish on the contamination of various cell lines by HeLa. Science writer Michael Gold wrote about the HeLa cell contamination problem in his book A Conspiracy of Cells. He describes Nelson-Rees’s identification of this pervasive worldwide problem — affecting even the laboratories of the best physicians, scientists, and researchers, including Jonas Salk — and many, possibly career-ending, efforts to address it. According to Gold, the HeLa contamination problem almost led to a Cold War incident: The USSR and the USA had begun to cooperate in the war on cancer launched by President Richard Nixon only to find that the exchanged cells were contaminated by HeLa. Rather than focus on how to resolve the problem of HeLa cell contamination, many scientists and science writers continue to document this problem as simply a contamination issue — caused not by human error or shortcomings but by the hardiness, proliferating, or overpowering nature of HeLa. Recent data suggest that cross-contaminations are still a major ongoing problem with modern cell cultures.”


Henrietta Lacks rests today in an unmarked grave in the cemetery across the street from her family’s tobacco farm in Virginia. / photo by Rebecca Skloot

RELENTLESS
http://www.jhu.edu/~jhumag/0400web/01.html
by Rebecca Skloot / April 2000

Not long before her death, Henrietta Lacks danced. As the film rolled, her long thin face teased the camera, flashing a seductive grin as she moved, her eyes locked on the lens. She tilted her head back and raised her hands, waving them softly in the air before letting them fall to smooth her curlers. Then the film went blank. Henrietta danced in Turners Station, a small, segregated Baltimore community where she moved in 1943. She had come by train from a plantation town in Virginia, leaving her kin behind, most still picking tobacco long after freedom from slavery. As she sped toward Baltimore, at the age of 23, her husband, David Lacks, waited in their new brick house with a stove that burned gas instead of wood. Henrietta knew she was heading into a more modern world. What she didn’t know was that less than a decade later, after giving birth to her fifth child, her womb would give rise to a new age in medicine.

On February 1, 1951, under the cover of a solitary tree, David Lacks stared through the window of his parked car, watching the rain fall. He and his five children, three still in diapers, sat outside Hopkins Hospital, waiting for Henrietta. A few days earlier, she had found blood spotting her underwear. Now, Howard Jones, a Hopkins physician, found a smooth eggplant-hued tumor glistening under the light on Henrietta’s cervix. He touched its surface, shocked by its supple texture, and Henrietta bled. Jones carefully cut a section of her quarter-sized tumor, sent it to the lab for a diagnosis, and sent Henrietta home with her family. Then came the news: the tumor was malignant.

Henrietta returned to Hopkins eight days later. While David and the children waited under the tree, physicians covered her cervix with radium in an attempt to kill the cancer. But before applying the first treatment, a young resident took one more sample. This one went to George Gey, head of tissue culture research at Hopkins. He and his wife, Margaret, had been searching for a tool for the study of cancer: a line of human cells that would live indefinitely outside the body. If they succeeded, they could observe and test human cells in ways they could never do in humans. Eventually, they could discover the cure for cancer. They were sure of it. After two decades of failure in their laboratory attempts, the Geys turned their attention to cervical cells, at the request of Richard TeLinde, then Hopkins chairman of Gynecology. TeLinde wanted cervical cells for his own research; the Geys wanted any cancer cells they could get. The day George Gey got his hands on Henrietta Lacks’s cells, everything changed. For the Geys, for medicine, and eventually for the Lackses.

Henrietta Lacks’s cells multiplied like nothing anyone had seen. They latched to the sides of test tubes, consumed the medium around them, and within days, the thin film of cells grew thicker and thicker. But Henrietta’s tumor cells took over her body as quickly as they’d taken over test tubes. Within months, tumors appeared on almost every organ, and Henrietta moaned from her bed for the Lord to help her. The day she died, October 4, 1951, George Gey appeared on national television with a vial of Henrietta’s cells. He called them HeLa cells, held them up to the camera, and said, “It is possible that, from a fundamental study such as this, we will be able to learn a way by which cancer can be completely wiped out.” Gey introduced the nation to his hopes for curing cancer while Henrietta’s body lay in the Hopkins morgue, her toenails shining with a fresh coat of red polish. And her family knew nothing of any cells.

As a train carrying Henrietta’s casket rolled back toward Virginia, her cells shocked Gey with their strength. The local undertaker met Henrietta’s body at the station where, less than a decade earlier, she had boarded her train to Baltimore. He buried her in an unmarked grave across the street from her family’s tobacco field, behind the house where her mother was born. But in the Lacks family cemetery, where cattle roam freely when the season’s right, folks today don’t know much about HeLa. They don’t know that soon after Henrietta’s death in 1951, Gey and his colleagues used her cells to grow the polio virus that was ravaging children throughout the world.

“It was Henrietta Lacks’s cells that embraced the polio virus,” says Roland Pattillo, a former fellow of Gey’s, who is now director of gynecologic oncology at Morehouse School of Medicine. “She made it possible to grow the virus so the vaccine could be developed.” That was just the beginning. Gey and his colleagues went on to develop a test, using HeLa cells, to distinguish between the many polio strains, some of which had no effect on the human body. Until researchers knew which strain produced polio’s crippling effects, they couldn’t know what they were fighting. Through Henrietta’s cells, they found their culprit. With this information, Jonas Salk and his colleagues in Pittsburgh created a vaccine, and the National Foundation for Infantile Paralysis established facilities for mass-producing the HeLa cells. They would use them to test the polio vaccine before its use in humans. In the meantime, Gey shared his resources.

Packaged in small tubes tucked in plastic foam containers, with careful instructions for feeding and handling, shipments of Henrietta’s cells went out to Gey’s colleagues around the world. . . to Minnesota, New York, Chile, Russia. . .the list goes on. Researchers welcomed the gifts, allowing HeLa to grow. They used the cells to search for a leukemia cure and the cause of cancer, to study viral growth, protein synthesis, genetic control mechanisms, and the unknown effects of drugs and radiation. And though Henrietta never traveled farther than from Virginia to Baltimore, her cells sat in nuclear test sites from America to Japan and multiplied in a space shuttle far above the Earth. Still, David Lacks and his children hadn’t a clue.

“The [only thing] I heard about it was, she had that cancer,” David Lacks says. “They called me, said come up there because she died. They asked me to let them take samples, and I decided not to let them do it.” But the researchers told Lacks they could use his wife’s cells to study cancer. Something that might strike his family again someday. Their studies might someday help his children and his grandchildren. Lacks was skeptical. But, he thought, if they want to see how my wife’s cancer might affect our children, and get ready to treat them if they get sick, I guess that might be okay. “My cousins said it wouldn’t hurt, so eventually I let them do it. The [doctors said] it was the fastest growing cancer they’d ever known, and they were supposed to tell me about it, to let me know, but I never did hear.”

He didn’t hear, that is, until a hazy day in 1975, 24 years after Henrietta’s death, when his daughter-in-law went to a friend’s house for dinner. In a two-story brown-brick townhouse in Baltimore, five doors down from her home, Barbara Lacks, the wife of Henrietta’s eldest son, Lawrence, sat down for dinner at her friend Jasmine’s house. The two women had been friends for years, but Barbara had never met Jasmine’s sister or brother-in-law, who came all the way from D.C. for dinner. They gathered around the mahogany table, surrounded by plants and soft light, and Jackson, Jasmine’s brother-in-law, looked across the table at Barbara. “You know,” he said, “your name sounds so familiar.” Jackson was a scientist who spent his days in a Washington laboratory. “I think I know what it is. . .I’ve been working with some cells in my lab; they’re from a woman called Henrietta Lacks. Are you related?”

“That’s my mother-in-law,” Barbara whispered, shaking her head. “She’s been dead almost 25 years, what do you mean you’re working with her cells?” Jackson explained. The cells, he told her, had been alive since Henrietta’s death and were all around the world. Actually, by that time, they were standard reference cells–few molecular scientists hadn’t worked with them. Barbara excused herself, thanking him, promising she would be in touch, and ran home to tell her husband what she’d heard. Your mother’s cells, she told him, they’re alive. Lawrence called his father who called his brothers and his sister. They just couldn’t understand. “The question I really had,” says Barbara, “the question I kept asking Jackson was, I wonder why they never mentioned anything to the family. They knew how to contact us.” But, since no one had called in the two decades after Henrietta’s death, instead of continuing to wonder, the Lacks family got on the phone and rang Hopkins themselves. And they did it at an opportune time. Henrietta’s cells, it turned out, had grown out of control. Some scientists thought her relatives were the only people who could help.

Henrietta’s cells were, and still are, some of the strongest cells known to science–they reproduce an entire generation every 24 hours. “If allowed to grow uninhibited,” Howard Jones and his Hopkins colleagues said in 1971, “[HeLa cells] would have taken over the world by this time.” This strength provided a research workhorse to irradiate, poison, and manipulate without inflicting harm; but it also meant research labs were only big enough for one culture: HeLa. Though it took three decades for the Geys to succeed with their efforts to create a human cell line, after their success with HeLa, culturing cells became suspiciously easy. Researchers cultivated tissue samples from their own bodies and the bodies of their families and patients. Most grew successfully. Sure, the samples struggled during the first few weeks, or even months, in culture, but then, suddenly, they flourished. Samples blossomed into full-blown healthy cell lines with the strength of, well, the HeLa cell.

In 1974, a researcher by the name of Walter Nelson-Rees started what everyone called a nasty rumor: HeLa cells, he claimed, had infiltrated the world’s stock of cell cultures. No one wanted to believe him. For almost three decades researchers had done complex experiments on what they thought were breast cells, prostate cells, or placental cells, and suddenly, rumor had it they’d been working with HeLa cells all along. To believe this would be to believe that years of work and millions of dollars had, in essence, been wasted. The truth was, Henrietta’s cells had traveled through the air, on hands, or the tips of pipettes, overpowering any cell cultures they encountered. And researchers had no idea. There was no way to know which cells were growing in the petri dish. And there was no universally accepted test for a cell culture’s identity. To accept or reject the theory that HeLa cells had taken over, researchers wanted more evidence. This required detailed information about the cells’ source. But they knew only the barest facts about Henrietta: She was black, she was a woman, and she was dead.

Though it may have been coincidence, soon after the Lacks children called Hopkins asking about their mother’s cells, letters appeared in their mailboxes. Several Hopkins researchers wondered, the letters said, if the Lacks family would be willing to donate some blood and tissue samples. Soon, a nurse circled Barbara Lacks’s narrow dining room table with needles, blood tubes, and slides, gathering samples from the Lackses. From these donations, researchers would find precious bits of information about Henrietta–like her blood type–that they could use in their attempts to study her cells. “[It was] an elegant piece of work,” Nelson-Rees told a reporter, “by simple Aristotelian class logic and pure applied genetics, you could speculate, to a remarkable extent, as to what Henrietta Lacks’s [genetic makeup] was.” And this is exactly what the researchers did. But if you ask the family, you’ll get a different story. “The doctors tested us to see what was in my mother’s system, was it hereditary,” recalls Henrietta’s son Sonny Lacks. “But that’s all they said. They never got in contact with us again. We contacted them a couple a times, but they said they’d get back at us, then after a while, we just got tired of calling, so everybody just let it go and went back with their lives.” But every now and then, they wonder if they have the gene that killed their mother.

This point of confusion between what the researchers intended to do with the samples and what the participants understood their intentions to be is only one of several elements of the Lackses’ story that points to important ethical questions. Some have yet to find answers. “There are at least two issues that cases like Mrs. Lacks’s raise,” says Ruth Faden, executive director of the Johns Hopkins Bioethics Institute and the Philip Franklin Wagley Professor of Biomedical Ethics. “One is the question of consent, and the other is what, if anything, is morally or legally due to a person if something of commercial value is developed from their cells.”

In terms of informed consent, says Faden, “the Lackses’ story is a sad commentary on how the biomedical research community thought about research in the 1950s. But it was not at all uncommon for physicians to conduct research on patients without their knowledge or consent. That doesn’t make it right. It certainly wasn’t right. It was also unfortunately common.” Since the era when Henrietta walked through the doors of Hopkins, the field of biomedical ethics was born, and with it came regulations about informed consent. Patients now have something like a legal promise that no physician will take samples without permission. It’s the latter issue, the commodification of human body parts, which is still an extremely unsettled area of ethics and law in public policy. And for the Lackses, who don’t all have health insurance or the money to afford it, the issue of commercial value in this case is very unsettled. Unsettled, but with little recourse.

Since the development of the HeLa cells, there’s been an explosion of both scientific and commercial interest in the use of human tissues for research purposes, yet research subjects generally see none of the returns. “The amazing thing,” says Faden, “is that here we are, almost 50 years later, the capacity to develop commercial products from human tissues is dramatically greater now than it was then, and we still haven’t figured out how to handle it. . . . In terms of public policy, we’re real clear that you can’t buy and sell organs, that’s illegal. But you can sell blood. You can sell human eggs and sperm. But you can’t sell your kidney. And apparently, you can’t sell your cells, you give those away. So, nothing is very clear, and there are a lot of deep worries about putting price tags on the human body.” This is partially why the United States has recently launched a Presidential Bioethics Advisory Commission to address this and related issues.

To this day, members of the Lacks family feel they’ve been passed over in the story of the HeLa cells. They know their mother’s cells started a medical revolution and are now bought and sold around the world. They’re pretty sure that someone, somewhere, has profited from their mother’s death. They know that someone wasn’t related to Henrietta. And their experience is not well-known. In cases like these, Faden agrees, a good way to begin addressing this problem is through the telling of a story from which everyone can learn. This story starts with Henrietta and the origin of the HeLa cells: They were not from Helen Lane or Helen Larson, as many publications have mistakenly reported, they were from Henrietta Lacks, wife of David, mother of five.

aka HELEN LANE, aka HELEN LARSEN
http://www.oprah.com/world/Excerpt-From-The-Immortal-Life-of-Henrietta-Lacks_1
adapted from ‘The Immortal Life of Henrietta Lacks’ by Rebecca Skloot / 2010

In 1951, at the age of 30, Henrietta Lacks, the descendant of freed slaves, was diagnosed with cervical cancer—a strangely aggressive type, unlike any her doctor had ever seen. He took a small tissue sample without her knowledge or consent. A scientist put that sample into a test tube, and, though Henrietta died eight months later, her cells—known worldwide as HeLa—are still alive today. They became the first immortal human cell line ever grown in culture and one of the most important tools in medicine: Research on HeLa was vital to the development of the polio vaccine, as well as drugs for treating herpes, leukemia, influenza, hemophilia, and Parkinson’s disease; it helped uncover the secrets of cancer and the effects of the atom bomb, and led to important advances like cloning, in vitro fertilization, and gene mapping. Since 2001 alone, five Nobel Prizes have been awarded for research involving HeLa cells.

There’s no way of knowing exactly how many of Henrietta’s cells are alive today. One scientist estimates that if you could pile all the HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons—the equivalent of at least 100 Empire State Buildings.

Today, nearly 60 years after Henrietta’s death, her body lies in an unmarked grave in Clover, Virginia. But her cells are still among the most widely used in labs worldwide—bought and sold by the billions. Though those cells have done wonders for science, Henrietta—whose legacy involves the birth of bioethics and the grim history of experimentation on African-Americans—is all but forgotten.

On January 29, 1951, David Lacks sat behind the wheel of his old Buick, watching the rain fall. He was parked under a towering oak tree outside Johns Hopkins Hospital with three of his children—two still in diapers—waiting for their mother, Henrietta. A few minutes earlier she’d jumped out of the car, pulled her jacket over her head, and scurried into the hospital, past the “colored” bathroom, the only one she was allowed to use. In the next building, under an elegant domed copper roof, a ten-and-a-half-foot marble statue of Jesus stood, arms spread wide, holding court over what was once the main entrance of Hopkins. No one in Henrietta’s family ever saw a Hopkins doctor without visiting the Jesus statue, laying flowers at his feet, saying a prayer, and rubbing his big toe for good luck. But that day Henrietta didn’t stop.

She went straight to the waiting room of the gynecology clinic, a wide-open space, empty but for rows of long, straight-backed benches that looked like church pews. “I got a knot on my womb,” she told the receptionist. “The doctor need to have a look.” For more than a year Henrietta had been telling her closest girlfriends that something didn’t feel right. One night after dinner, she sat on her bed with her cousins Margaret and Sadie and told them, “I got a knot inside me.”

“A what?” Sadie asked. “A knot,” she said. “It hurt somethin’ awful—when that man want to get with me, Sweet Jesus aren’t them but some pains.” When sex first started hurting, she thought it had something to do with baby Deborah, who she’d just given birth to a few weeks earlier, or the bad blood David sometimes brought home after nights with other women—the kind doctors treated with shots of penicillin and heavy metals.

About a week after telling her cousins she thought something was wrong, at the age of 29, Henrietta turned up pregnant with Joe, her fifth child. Sadie and Margaret told Henrietta that the pain probably had something to do with a baby after all. But Henrietta still said no. “It was there before the baby,” she told them. “It’s somethin’ else.” They all stopped talking about the knot, and no one told Henrietta’s husband anything about it. Then, four and a half months after baby Joseph was born, Henrietta went to the bathroom and found blood spotting her underwear when it wasn’t her time of the month.

She filled her bathtub, lowered herself into the warm water, and slowly spread her legs. With the door closed to her children, husband, and cousins, Henrietta slid a finger inside herself and rubbed it across her cervix until she found what she somehow knew she’d find: a hard lump, deep inside, as though someone had lodged a marble the size of her pinkie tip just to the left of the opening to her womb.

Henrietta climbed out of the bathtub, dried herself off, and dressed. Then she told her husband, “You better take me to the doctor. I’m bleeding and it ain’t my time.” Her local doctor took one look inside her, saw the lump, and figured it was a sore from syphilis. But the lump tested negative for syphilis, so he told Henrietta she’d better go to the Johns Hopkins gynecology clinic.

The public wards at Hopkins were filled with patients, most of them black and unable to pay their medical bills. David drove Henrietta nearly 20 miles to get there, not because they preferred it, but because it was the only major hospital for miles that treated black patients. This was the era of Jim Crow—when black people showed up at white-only hospitals, the staff was likely to send them away, even if it meant they might die in the parking lot.

When the nurse called Henrietta from the waiting room, she led her through a single door to a colored-only exam room—one in a long row of rooms divided by clear glass walls that let nurses see from one to the next. Henrietta undressed, wrapped herself in a starched white hospital gown, and lay down on a wooden exam table, waiting for Howard Jones, the gynecologist on duty. When Jones walked into the room, Henrietta told him about the lump. Before examining her, he flipped through her chart:

Breathing difficult since childhood due to recurrent throat infections and deviated septum in patient’s nose. Physician recommended surgical repair. Patient declined. Patient had one toothache for nearly five years. Only anxiety is oldest daughter who is epileptic and can’t talk. Happy household. Well nourished, cooperative. Unexplained vaginal bleeding and blood in urine during last two pregnancies; physician recommended sickle cell test. Patient declined. Been with husband since age 14 and has no liking for sexual intercourse. Patient has asymptomatic neurosyphilis but canceled syphilis treatments, said she felt fine. Two months prior to current visit, after delivery of fifth child, patient had significant blood in urine. Tests showed areas of increased cellular activity in the cervix. Physician recommended diagnostics and referred to specialist for ruling out infection or cancer. Patient canceled appointment. It was no surprise that she hadn’t come back all those times for follow-up. For Henrietta, walking into Hopkins was like entering a foreign country where she didn’t speak the language. She knew about harvesting tobacco and butchering a pig, but she’d never heard the words cervix orbiopsy. She didn’t read or write much, and she hadn’t studied science in school. She, like most black patients, only went to Hopkins when she thought she had no choice.

Henrietta lay back on the table, feet pressed hard in stirrups as she stared at the ceiling. And sure enough, Jones found a lump exactly where she’d said he would. If her cervix was a clock’s face, the lump was at 4 o’clock. He’d seen easily a thousand cervical cancer lesions, but never anything like this: shiny and purple (like “grape Jello,” he wrote later), and so delicate it bled at the slightest touch. Jones cut a small sample and sent it to the pathology lab down the hall for a diagnosis. Then he told Henrietta to go home.

Soon after, Howard Jones dictated notes about Henrietta and her diagnosis: “Her history is interesting in that she had a term delivery here at this hospital, September 19, 1950,” he said. “No note is made in the history at that time or at the six weeks’ return visit that there is any abnormality of the cervix.” Yet here she was, three months later, with a full-fledged tumor. Either her doctors had missed it during her last exams—which seemed impossible—or it had grown at a terrifying rate.

Henrietta Lacks was born Loretta Pleasant in Roanoke, Virginia, on August 1, 1920. No one knows how she became Henrietta. A midwife named Fannie delivered her in a small shack on a dead-end road overlooking a train depot, where hundreds of freight cars came and went each day. Henrietta shared that house with her parents and eight older siblings until 1924, when her mother, Eliza Lacks Pleasant, died giving birth to her tenth child.

Henrietta’s father, Johnny Pleasant, was a squat man who hobbled around on a cane he often hit people with. Johnny didn’t have the patience for raising children, so when Eliza died, he took them all back to Clover, Virginia, where his family still farmed the tobacco fields their ancestors had worked as slaves. No one in Clover could take all ten children, so relatives divided them up—one with this cousin, one with that aunt. Henrietta ended up with her grandfather, Tommy Lacks.

Tommy lived in what everyone called the home-house, a four-room wooden cabin that once served as slave quarters, with plank floors, gas lanterns, and water Henrietta hauled up a long hill from the creek. The home-house stood on a hillside where wind whipped through cracks in the walls. The air inside stayed so cool that when relatives died, the family kept their corpses in the front hallway for days so people could visit and pay respects. Then they buried them in the cemetery out back.

Henrietta’s grandfather was already raising another grandchild that one of his daughters left behind after delivering him on the home-house floor. That child’s name was David Lacks, but everyone called him Day, because in the Lacks country drawl, house sounds like hyse, and David sounds like Day. No one could have guessed Henrietta would spend the rest of her life with Day—first as a cousin growing up in their grandfather’s home, then as his wife.

Like most young Lackses, Day didn’t finish school: He stopped in the fourth grade because the family needed him to work the tobacco fields. But Henrietta stayed until the sixth grade. During the school year, after taking care of the garden and livestock each morning, she’d walk two miles—past the white school where children threw rocks and taunted her—to the colored school, a three-room wooden farmhouse hidden under tall shade trees.

At nightfall the Lacks cousins built fires with pieces of old shoes to keep the mosquitoes away, and watched the stars from beneath the big oak tree where they’d hung a rope to swing from. They played tag, ring-around-the-rosy, and hopscotch, and danced around the field singing until Grandpa Tommy yelled for everyone to go to bed.

Henrietta and Day had been sharing a bedroom since she was 4 and he was 9, so what happened next didn’t surprise anyone: They started having children together. Their son Lawrence was born just months after Henrietta’s 14th birthday; his sister, Lucile Elsie Pleasant, came along four years later. They were both born on the floor of the home-house like their father, grandmother, and grandfather before them. People wouldn’t use words like epilepsy, mental retardation, or neurosyphilis to describe Elsie’s condition until years later. To the folks in Clover, she was just simple. Touched.

Henrietta and Day married alone at their preacher’s house on April 10, 1941. She was 20; he was 25. They didn’t go on a honeymoon because there was too much work to do, and no money for travel. Henrietta and Day were lucky if they sold enough tobacco each season to feed the family and plant the next crop. So after their wedding, Day went back to gripping the splintered ends of his old wooden plow as Henrietta followed close behind, pushing a homemade wheelbarrow and dropping tobacco seedlings into holes in the freshly turned red dirt.

A few months later, Day moved north to Turner Station, a small black community outside Baltimore where he’d gotten a job working in a shipyard. Henrietta stayed behind to care for the children and the tobacco until Day made enough money for a house and three tickets north. Soon, with a child on each side, Henrietta boarded a coal-fueled train from the small wooden depot at the end of Clover’s Main Street. She left the tobacco fields of her youth and the hundred-year-old oak tree that shaded her from the sun on so many hot afternoons. At the age of 21, she stared through the train window at rolling hills and wide-open bodies of water for the first time, heading toward a new life. After her visit to Hopkins, Henrietta went back to her usual routine, cleaning and cooking for her husband, their children, and the many cousins she fed each day. Less than a week later, Jones got her biopsy results from the pathology lab: “epidermoid carcinoma of the cervix, Stage I.” Translation: cervical cancer.

Cervical carcinomas are divided into two types: invasive carcinomas, which have penetrated the surface of the cervix, and noninvasive carcinomas, which haven’t. The noninvasive type is sometimes called “sugar-icing carcinoma,” because it grows in a smooth layered sheet across the surface of the cervix, but its official name is carcinoma in situ, which derives from the Latin for “cancer in its original place.”

In 1951 most doctors in the field believed that invasive carcinoma was deadly, and carcinoma in situ wasn’t. So they hardly treated it. But Richard Wesley TeLinde, head of gynecology at Hopkins and one of the top cervical cancer experts in the country, disagreed—he believed carcinoma in situ was simply an early stage of invasive carcinoma that, left untreated, eventually became deadly. So he treated it aggressively, often removing the cervix, uterus, and most of the vagina. He argued that this would drastically reduce cervical cancer deaths, but his critics called it extreme and unnecessary.

TeLinde thought that if he could find a way to grow living samples from normal cervical tissue and both types of cancerous tissue—something never done before—he could compare all three. If he could prove that carcinoma in situ and invasive carcinoma looked and behaved similarly in the laboratory, he could end the debate, showing that he’d been right all along, and doctors who ignored him were killing their patients. So he called George Gey (pronounced “guy”), head of tissue culture research at Hopkins.

Gey and his wife, Margaret, had spent the last three decades working to grow malignant cells outside the body, hoping to use them to find cancer’s cause and cure. But most of the cells died quickly, and the few that survived hardly grew at all. The Geys were determined to grow the first immortal human cells: a continuously dividing line of cells all descended from one original sample, cells that would constantly replenish themselves and never die. They didn’t care what kind of tissue they used, as long as it came from a person.

So when TeLinde offered Gey a supply of cervical cancer tissue in exchange for trying to grow some cells, Gey didn’t hesitate. And TeLinde began collecting samples from any woman who happened to walk into Hopkins with cervical cancer. Including Henrietta.

Jones called Henrietta on February 5, 1951, after getting her biopsy report back from the lab, and told her the tumor was malignant. Henrietta didn’t tell anyone what Jones said, and no one asked. She simply went on with her day as if nothing had happened, which was just like her—no sense upsetting anyone over something she could just deal with herself.

The next morning Henrietta climbed from the Buick outside Hopkins again, telling Day and the children not to worry. “Ain’t nothin’ serious wrong,” she said. “Doctor’s gonna fix me right up.” Henrietta went straight to the admissions desk and told the receptionist she was there for her treatment. Then she signed a form with the words operation permit at the top of the page. It said:

I hereby give consent to the staff of The Johns Hopkins Hospital to perform any operative procedures and under any anaesthetic either local or general that they may deem necessary in the proper surgical care and treatment of: ______________________________.

Henrietta printed her name in the blank space. A witness with illegible handwriting signed a line at the bottom of the form, and Henrietta signed another. Then she followed a nurse down a long hallway into the ward for colored women, where Howard Jones and several other white physicians ran more tests than she’d had in her entire life. They checked her urine, her blood, her lungs. They stuck tubes in her bladder and nose.

Henrietta’s tumor was the invasive type, and like hospitals nationwide, Hopkins treated all invasive cervical carcinomas with radium, a white radioactive metal that glows an eerie blue. So the morning of Henrietta’s first treatment, a taxi driver picked up a doctor’s bag filled with thin glass tubes of radium from a clinic across town. The tubes were tucked into individual slots inside small canvas pouches hand-sewn by a local Baltimore woman. One nurse placed the pouches on a stainless steel tray. Another wheeled Henrietta into the small colored-only operating room, with stainless steel tables, huge glaring lights, and an all-white medical staff dressed in white gowns, hats, masks, and gloves.

With Henrietta unconscious on the operating table in the center of the room, her feet in stirrups, the surgeon on duty, Lawrence Wharton Jr., sat on a stool between her legs. He peered inside Henrietta, dilated her cervix, and prepared to treat her tumor. But first—though no one had told Henrietta that TeLinde was collecting samples or asked if she wanted to be a donor—Wharton picked up a sharp knife and shaved two dime-size pieces of tissue from Henrietta’s cervix: one from her tumor, and one from the healthy cervical tissue nearby. Then he placed the samples in a glass dish.

Wharton slipped a tube filled with radium inside Henrietta’s cervix, and sewed it in place. He then sewed a pouch filled with radium to the outer surface of her cervix and packed another against it. He slid several rolls of gauze inside her vagina to help keep the radium in place, then threaded a catheter into her bladder so she could urinate without disturbing the treatment. When Wharton finished, a nurse wheeled Henrietta back into the ward, and a resident took the dish with the samples to Gey’s lab, as he’d done many times before. Gey still got excited at moments like this, but everyone else in his lab saw Henrietta’s sample as something tedious—the latest of what felt like countless samples that scientists and lab technicians had been trying and failing to grow for years. Gey’s 21-year-old assistant, Mary Kubicek, sat eating a tuna salad sandwich at a long stone culture bench that doubled as a break table. She and Margaret and the other women in the Gey lab spent many hours there, all in nearly identical cat’s-eye glasses with fat dark frames and thick lenses, their hair pulled back in tight buns. “I’m putting a new sample in your cubicle,” Gey told Mary.

She pretended not to notice. “Not again,” she thought, and kept eating her sandwich. Mary knew she shouldn’t wait—every moment those cells sat in the dish made it more likely they’d die. But they always died anyway. “Why bother?” she thought. At that point, there were many obstacles to growing cells successfully. For starters, no one knew exactly what nutrients they needed to survive or how best to supply them. But the biggest problem facing cell culture was contamination. Bacteria and a host of other microorganisms could find their way into cultures—from people’s unwashed hands, their breath, and dust particles floating through the air—and destroy them. Margaret Gey had been trained as a surgical nurse, which meant sterility was her specialty—it was key to preventing deadly infections in patients in the operating room.

Margaret patrolled the lab, arms crossed, leaning over technicians’ shoulders as they worked, inspecting glassware for spots or smudges. Mary followed Margaret’s sterilizing rules meticulously to avoid her wrath. Only then did she pick up the pieces of Henrietta’s cervix—forceps in one hand, scalpel in the other—and carefully slice them into one-millimeter squares. She sucked each square into a pipette, and dropped them one at a time onto chicken-blood clots she’d placed at the bottom of dozens of test tubes. She covered each clot with several drops of culture medium, plugged the tubes with rubber stoppers, and wrote “HeLa,” for Henrietta and Lacks, in big black letters on the side of each tube. Then she put them in an incubator.

For the next few days, Mary started each morning with her usual sterilization drill. She’d peer into all the incubating tubes, laughing to herself and thinking, “Nothing’s happening.” “Big surprise.” Then she saw what looked like little rings of fried egg white around the clots at the bottom of each tube. The cells were growing, but Mary didn’t think much of it—other cells had survived for a while in the lab. But Henrietta’s cells weren’t merely surviving—they were growing with mythological intensity. By the next morning, they’d doubled. Mary divided the contents of each tube in two, giving them room to grow, and soon she was dividing them into four tubes, then six. Henrietta’s cells grew to fill as much space as Mary gave them. Still, Gey wasn’t ready to celebrate. “The cells could die any minute,” he told Mary. But they didn’t. The cells kept growing like nothing anyone had seen, doubling their numbers every 24 hours, accumulating by the millions. “Spreading like crabgrass!” Margaret said. As long as they had food and warmth, Henrietta’s cancer cells seemed unstoppable. Soon, George told a few of his closest colleagues that he thought his lab might have grown the first immortal human cells. To which they replied, Can I have some? And George said yes.

the HENRIETTA LACKS FOUNDATION
http://rebeccaskloot.com/book-special-features/henrietta-lacks-foundation/
http://www.flickr.com/photos/42653706@N00/sets/72157623243930457/
http://www.citypaper.com/news/story.asp?id=3426&p=1
The Life After Death of Henrietta Lacks
by Van Smith / 4.17.2002

In the 27 years since the Lacks family serendipitously learned of Henrietta’s unwitting contribution, little has been done to honor her. “Henrietta Lacks Day” is celebrated in Turner Station each year on Feb. 1. In 1996, prompted by Atlanta’s Morehouse College, that city’s mayor proclaimed Oct. 11 Henrietta Lacks Day. The following year, Congress passed a resolution in her memory sponsored by Rep. Robert Ehrlich (R-Md.), whose 2nd District includes Turner Station, and the British Broadcasting Corp. produced a documentary on her remarkable story. Beyond that, however, virtually nothing has been done to celebrate Lacks’ contribution–not even by Hopkins, which gained immeasurable prestige from Gey’s work with her cells.

Lacks-Pullum is bitter about this. “We never knew they took her cells, and people done got filthy rich [from HeLa-based research], but we don’t get a dime,” she says. The family can’t afford a reputable lawyer to press its case for some financial stake in the work. She says she has appealed to Hopkins for help, and “all they do is pat me on my shoulder and put me out the door.”

Hopkins spokesperson Gary Stephenson is quick to point out that Hopkins never sold HeLa, so it didn’t make money from Henrietta’s contribution. Still, he says, “there are people here who would like something done, and I’m hoping that at some point something will be done in a formal way to note her very, very important contribution.” Lacks-Pullum shares those hopes, but she is pessimistic. “Hopkins,” she says, “they don’t care.”

Lost in the acrimony over ethical and financial issues stemming from Henrietta Lacks’ cells, though, is Henrietta Lacks herself. A descendant of slaves and slaveholders, she grew up farming the same land on which her forebears toiled–and that her relatives still farm today. As part of an aspiring black middle class with rural roots, she left her childhood home to join a migration to Baltimore, where Bethlehem Steel was eager to hire hard workers from the country. She was in the midst of realizing an American dream when her life was cut short. And her cells helped realize society’s larger dreams for health and knowledge. As such, she’s been called a hero, a martyr, even a saint. But during her life, as Ehrlich said to his colleagues in Congress, Henrietta Lacks “was known as pleasant and smiling, and always willing the lend a helping hand.” That she did, in more ways than she ever knew.

Trying to find Henrietta Lacks’ grave is a lesson in irony. She is now a world-famous woman, yet her body rests in an unmarked plot in a family burial ground next to her childhood house, now long abandoned and close to falling down. No one, not even her relatives, knows precisely which grave plot is hers.

The search starts in Clover, Va., where Henrietta grew up farming tobacco on her family’s land. It’s a small town of about 200 people in a region southwest of Richmond known as Southside. The first stop–Clover Cemetery, on the outskirts of town–is fruitless; plenty of Lackses but no Henrietta. A quick visit to the post office yields a clue, offered with matter-of-fact bluntness by a man at the copy machine. “What did you say her name was? Henrietta Lacks? Was she black or white?” Hearing the answer, he continues: “The cemeteries you can see from the road, they’re mostly for whites. You got to go back off the road to get to the black cemetery. So go back up that road and make a right on Lacks Town Road. A lot of blacks live up there. You can’t see the cemetery from the road, so you’ll have to ask people. But someone up there should be able to help you.”

Lacks Town is not really a town but a tiny community of relatives living along a one-mile dead-end road. Trailers, shacks, old log homes, and a ranch house or two are surrounded by small plots of farmland, barns, and machinery, with woods filling in the gaps. It’s part of Clover, but Lacks Town clearly has a distinct identity. “They stick together down there,” a local woman from the other side of Clover explains later.

In short order, someone helps me out: Otis Ferrell Jr., a young man, probably in his 30s, who immediately recognizes the proffered name. “Oh, the lady with the cancer cells,” he exclaims. “Yeah, she’s buried up there.” Ferrell points to the top of a hill in a tree-cluttered cow pasture, gesturing toward two downed trees, clearly visible from the road, giant gray hulks lying on their sides next to a large rusty-roofed abandoned building. “That’s where they whupped the slaves,” he says candidly (though falsely, his elders later explain). “And one day the trees just came down. The cemetery is just past them and that old house. Yeah, she’s up there, but the grave’s unmarked. Uncle Clifton knows which one it is.”

Clifton Garrett is Henrietta Lacks’ cousin, now in his 80s. He lives nearby, about a quarter mile down from Lacks Town Road, and he’s burning the leaves in his yard while heating up the barbecue grill. “What, you going to build a memorial?” he retorts when asked if he knows which grave is Henrietta’s, in a tone that suggests it’s high time someone did. As smoke and embers billow around, he says he’s not exactly sure which grave is hers. “I know where her mother is buried,” he says. “She must be close by.”

Garrett gives a poignant tour of the land where Henrietta Lacks is buried. The property, he says, belonged to Tommy Lacks, who, along with his two brothers, was a patriarch of Clover’s African-American Lackses. Tommy was Henrietta’s grandfather, and he cared for her and her siblings after their mother died.

“Henrietta was raised up in that house, and her mother was born in it,” Garrett says as he strolls past the dilapidated building. “It’s called the Old Home House. It was built in slave times. Hadn’t nobody lived in this house in many years. Ain’t nobody to take care of it, and it just started falling down. But back then, they kept everything clean. When we was children, we played together here. There was a henhouse, an icehouse, a corn silo, a stable. But now there’s nothing left of anything.”

It’s hard to say how many ancestors are laid to rest in the burial ground; many of the graves are unmarked, and the sites have long been trampled by cows. “They knocked the rocks away when they came in and cleaned up with a bulldozer,” Garrett explains. “This was a big family,” he continues. “Everybody in this cemetery is related one way or another. When they die, they bring them here because this is the family cemetery.”

Henrietta’s mother, Eliza Pleasant, was buried here in 1924 after she died in Roanoke, Va., giving birth to her 10th child. “I remember when they brought her here,” Garrett says. “I was only about 2 or 3 years old, but I remember it. She had a coffin and they opened it, and a little light in the coffin came on. My memory’s good.”

Eliza’s husband, John Randall Pleasant, worked for the railroad in Roanoke, where Henrietta was born in 1920. When Eliza passed away, John moved their children back to the Old Home House to be raised by their grandfather, Tommy. Eliza’s grave has a headstone: eliza, wife of j.r. pleasant. jul 12, 1886.-oct. 28, 1924. gone but not forgotten. Indentations in the earth indicate five other unmarked graves in two rows behind the headstone. One of them is John’s. One of them is Henrietta’s. Neither Garrett nor any other family members I was able to find in Clover or in Baltimore knows which is which.

Clifton Garrett did know Henrietta, though, and remembers her fondly. “She was just an average child. A nice friendly girl and everything. That’s all I can tell you. We would play out in the yard, go to school.” Going to Clover School, which was for black children and offered instruction through seventh grade, meant a two-mile walk, taking shortcuts through fields, forests, and backyards–and right past Clover Elementary School, then white-only. Garrett still remembers the names of his teachers and the school’s principal, and that the principal’s son was killed during the attack on Pearl Harbor.

“Henrietta helped on the farm until she went up to Baltimore,” Garrett says. That happened in 1943, a short while after her husband moved there for work for Beth Steel. Garrett moved north too, for a job at Beth Steel making nails in the wire mill. “After I got grown, then I went up there. A lot of people from around here did. There were company barracks to stay in, so we used to live in Sparrows Point until we moved to Turner Station. Henrietta’s husband, David, worked on the shipyard. He was a hard worker. And Henrietta, she was a nice lady. Nice as she could be. Very friendly. Very friendly, she was.”

The dredged-up memories lead Garrett to muse aloud, about how some part of his cousin still thrives. “Her cells are still living,” he says, gazing at the ground near her grave. He shakes his head. “She’s dead, but her cells are still living,” he says again, and then is silent.

Gary Lacks, Henrietta’s nephew, cares for his elderly mother, Gladys Lacks, in Lacks Town. Like many in Clover, he’s a religious man, which gives him a unique perspective on his aunt’s story. “I go back to the Book of Genesis when God created man,” he says, his voice quickly rising in a crescendo of fervor. “He created him to live forever, really, but man ate up what God told him he couldn’t eat, and a process of death took over his body. But the possibility was in man that he could live–and if he could live, then his parts could live.” In Gary Lacks’ eyes, his aunt’s immortal cells are realizing God’s original intent for the human race.

Roberta Brooks’ view of Henrietta is more down to earth. “I worked in the field with Henrietta and Tommy and most of the Lacks Town folks when I was young,” recalls Brooks, another relative who lives near Clover. “I used to hang around more at the Old Home House than at my own house. We’d walk six miles to play together. We used to play on the creek, be teenagers together. Singing, playing horseshoes and ball games, shucking corn. There was lots to do. Children today come home and watch TV, but we had everything to do.”

As Brooks’ contemporaries got older, many took jobs in Baltimore. “A bunch of them in Lacks Town were working at Sparrows Point,” she says. “They were good jobs, about the best jobs paying, and they hired you quick there. They’d stay at the barracks, work all week, then return back to Clover for the weekend. And a lot of them stayed–and are living there still.”

Then Brooks touches on a sensitive subject–how Clover’s black Lackses and white Lackses are related. “When you get over in Lacks Town, oh, you don’t know who’s who,” she says. “It’s a big screwed-up thing. All the white Lackses and all the black Lackses, they’re all the same people. We all came up like family together, worked together and everything. And nobody married. Had bunches of children here and there and never married. It’s how it is. It’s a mess. And it’s just so deep, you can’t separate it.” The family history informs Brooks’ perspective on race relations: “That why I say, we’re all just human beings. Not black, not white. Just human beings. So it’s all about respect. That’s it. Respect.”

Gladys Lacks suffered a stroke last year. Her mind and eyes are as clear as day, but she has difficulty communicating. When it comes to the family’s tangled history, though, her two words speak volumes. “Master Ben,” she says, and leaves it at that. Records at the Halifax County courthouse offer further explanation. Ben Lacks and Albert Lacks, who were white (and related, although the African-American Lackses no longer recall how), owned the land Henrietta’s family worked and her descendants work still. When her grandfather, Tommy, married in 1903, he listed his parents as “Albert and Maria.” Tommy’s brother, James Lacks, married twice; the first time, he lists “Ben and Maria” as his parents, but the second time his parents are listed as “Albert and Maria.” Both white Lacks willed land to their black children. Albert’s 1888 will gave 10 acres each “from what is known as the Home Tract” to Tommy, James, and their brother Peter; Ben’s will of 1907 gave more land to Tommy and James.

“All of them hooked up together. They’re kin,” says William Morton, Peter Lacks’ grandson. Morton lives near Clover, having moved back after several decades in Baltimore, working at Sparrows Point (“Practically all of these fellows around here worked on the Point,” he says) and later for Morgan State University. Although records do not indicate Peter’s parentage, Morton says his grandfather “got land because he was kin to the owners.” Among Clover’s Lackses, he says, echoing his cousin Roberta Brooks, “that’s just the way it is.”

In Deborah Lacks-Pullum’s estimation, her parent’s middle-class aspirations in coming to Baltimore were realized. “We weren’t poor,” she says. “We were living comfortably.” Henrietta held down the home on New Pittsburgh Avenue in Turner Station while her husband, David, earned decent wages at the shipyard. Folks from Clover, in town to start jobs on the Point, would stay over until they could find their own housing. Before he came to Baltimore, David Lacks “was the hardest working man in Clover, working 15 acres by himself,” Lacks-Pullum says. Once here, he and Henrietta enjoyed a sterling reputation in the community as gracious, generous people.

“The door was always open for new arrivals from Clover,” says Barbara Wyche, a Morgan State lecturer who has dedicated much time and effort to studying Henrietta Lacks. The link to the family’s Virginia roots stayed strong, Wyche says–“Henrietta went home every summer and farmed.” It’s still strong: Deborah Lacks-Pullum frequently visits relatives in Clover.

After Henrietta died, David Lacks raised the children–Lawrence, Elsie (who died at the age of 15, a few years after Henrietta passed away), David Jr., Deborah, and Zakariyya–by himself, just as Henrietta’s grandfather had done after his wife died. They remained a happy family, though they missed their mother.

The news that Henrietta’s cells had been taken and used for research without their knowledge, though, cast a cloud over the family. David Lacks, Henrietta’s husband, doesn’t even like to talk about it. “He’s tired of talking–it’s the same thing, over and over,” she says. By default, Lacks-Pullum has become the family spokesperson when it comes to Henrietta–and she herself is getting weary. “I’m just tired of my family getting walked over,” she says. “It hurts.”

Recognition has been slow in coming, but the future holds some promise. Rebecca Skloot, a Pittsburgh-based science writer, has spent the last three years researching and writing a comprehensive book, HeLa: The Immortal Cells of Henrietta Lacks, that’s due to be published by Times Books next year. And Charlene Gilbert, a Washington, D.C.-based filmmaker, is hard at work on a documentary titled Colored Bodies: Henrietta Lacks and the HeLa Cells.

Back in Clover, Gary Lacks is roaming the Old Home House, trying to avoid the holes in the floorboards. He’s explaining how the house and the family burial ground have fallen into disrepair. “There’s no one to keep it up,” he says. “People only think about it when they come up here to bury someone, then they forget about it until the next time. They let the cows come in, and the cows keep it clean, keep the bushes down.”

It wouldn’t take much money to save the Old Home House, he says, and even less to keep up the cemetery, find Henrietta’s grave, give it a headstone. But people don’t have much money in Lacks Town. He hopes that with the attention generated by the book and the film–and with all the millions of dollars at Johns Hopkins’ disposal–resources will become available to give his aunt’s final resting place the honor it deserves. He’s hopeful, but he isn’t holding his breath.