The Secret Life of Cells
August 19, 2010 by Laura Wright
It’s no longer enough just to throw our stuff away; now we must worry about what someone else might do with it. So we buy shredders for our bank statements, pay to have old hard drives scrubbed free of personal information, and even take out identity-theft insurance to keep what was ours—yet what is still us—out of other people’s hands. I tear up junk mail, but 10 years ago, when my doctor threw away my tonsils, I didn’t think to have them cremated, pureed, or otherwise obliterated.
Discarded tonsils, an excised appendix, biopsied cells: these things contain information, and by extension, value. Odds are that someone, somewhere, makes a living collecting and redistributing such cast-offs for medical research or drug development. On the website for the U.S. Department of Health and Human Services, an obscure flow chart outlines the process by which “tissue collectors” pass their wares to repositories and data management centers that in turn divvy them up to “recipient investigators.” According to a RAND Corporation study, unearthed by journalist Rebecca Skloot, researchers have collected more than 307 million bits of flesh from more than 178 million people, and add 20 million more samples each year to the collection.
In The Immortal Life of Henrietta Lacks (Crown Publishing Group, 384 p., $26), Skloot explores the obscure world of tissue research and the ethical quandaries inherent in an industry built on the parts of actual people. Her story revolves around the life of Henrietta Lacks, who was born in 1920 in rural Virginia to former slaves, later moved to Baltimore, and died of cervical cancer in 1951. For several months before her death, Lacks was treated by doctors at Johns Hopkins Medical Center; along the way, and without her knowledge, part of her tumor was removed and sent to be analyzed in a ramshackle lab run by George Gey, head of tissue-culture research at the hospital. Lacks had signed a standard hospital consent form, but she could not have foreseen what would happen next, that her cells would change the course of medical science and, as Skloot documents, raise a host of questions about medical responsibility that continue to haunt the field today.
For decades, scientists had tried, unsuccessfully, to grow human cells (especially cancerous ones) in the lab, in order to study and perhaps cure diseases like cancer. But as George Gey shortly discovered, Henrietta Lack’s discarded cells were something of a modern miracle — they were the first ever cells to replicate indefinitely in the lab. Even as Lacks died a stone’s throw away, part of her lived on to become one of the 20th century’s most powerful tools for medical research: the HeLa cell, so-named based on the convention combining the first two letters of the patient’s first and last name. Gey gave vials of HeLa cells to any researcher who asked. They were mass-produced to test Jonas Salk’s polio vaccine, and helped make a cure possible. They were central to the discovery that the human papilloma virus, or HPV, causes cervical cancer, which in turn can be prevented by vaccination, and to the discovery of human chromosomes, which has led to the diagnosis of rare genetic diseases.
The list goes on, Skloot notes, as does the list of private companies that profited from the patient’s unwitting donation. And profit they did. HeLa cells quickly became commodities, factory-produced, airmailed worldwide, the basis for a global industry in the sale of human blood and tissue. One company, Invitrogen, sells specialized HeLa products that cost nearly $10,000 a vial. Skloot’s telling of this aspect of modern medicine reads like good fiction, rich with characters of mixed stripes: insensitive jerks, ignorant brainiacs; some blindly altruistic to the point of naïveté, others who fully understood that they were deceiving patients about the true value of their cast-off tissues.
Meanwhile, the family Henrietta Lacks sank deeper into poverty, mania, and despair, entirely forgotten by the medical community. Skloot spent the better part of a decade tracking down as many living members of the family as she could find, patiently calling, waiting, calling again, and waiting some more. Immortal Life interweaves their stories in a narrative that progresses in chronological order from the 1920s through today. But it is in Skloot’s rendering of the later decades that her writing is at its finest, her insights sharpest, and the emotional and ethical complexities of Lacks’s story most movingly rendered. From the story of a cell emerges the story of a person, a compelling human drama, that elucidates life’s most profound questions—how we got here and what happens when we’re gone.
As Skloot begins to earn the family’s trust, she is drawn in deeper. While on a road trip with Henrietta’s now middle-aged daughter, Deborah, to track down cousins in rural Virginia, Skloot finds herself reading the Bible—for the first time in her life—with Henrietta’s deeply religious descendents, who believe that Henrietta was brought back to do good in this world in the form of HeLa cells. Deborah, meanwhile, fears that her mother may be suffering physical or emotional trauma from been poked, prodded, and centrifuged in the name of scientific discovery. “When she found out scientists had been using HeLa cells to study viruses like AIDS and Ebola,” Skloot writes, “Deborah imagined her mother eternally suffering the symptoms of each disease: bone-crushing pain, bleeding eyes, suffocation.”
Without ever preaching, Skloot raises urgent questions about what “informed consent” really means. In 1951, doctors weren’t required to tell you when they used your cells for research nor to give you a share of any of the profits; they still aren’t today. Should they be? Or would that stricture seriously impede the free flow of scientific information and perhaps harm the public good? “How you should feel about this isn’t obvious,” Skloot notes in the book’s afterword. “It’s not as if scientists are stealing your arm or some vital organ. They’re using tissue scraps you parted with voluntarily. Still, that often involves taking some part of you.” As we hurtle toward the day when a visit to the doctor begins with a thorough DNA exam, the question of what exactly we’ll leave for the taking when we exit remains wide open.
Laura Wright is the senior editor of OnEarth magazine. She lives in New York City.
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15 Comments
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December 25, 2010 by dslip3
I think the medical community needs to pay retribution to the Lack family. If a profit was made off her cells, they need to share in the wealth. They need to pay every time her cells are sold for research. Just like a song on the radio or an old sit com on tv, that family needs to receive money for her cells.
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June 3, 2011 by charmagne E.Hall
I graduated from nursing school in 1972. We were required to take Microbiology Anatomy and Physiology and Biology. I am an African-American female. I was absolutely and totally unaware of the existence of Henrietta Lacks, much less of her contribution to all of human kind regardless of race,creed,color,national origin or religion. I have administered these drugs, helped to deliver a baby made possible by IVF. They called them HELA cells, but they dismissed her as a person by failing to make ordinary African-Americans aware much less other Americans aware once again, of our contributions to the world. As a nurse I had no idea that in witnessing the informed consent documents of their exclusion of the right of medican facilities to retain any part of us to use for good or bad.
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January 3, 2012 by ROSELLA LAMPE
I came to this section to find out about the bio science and the links to what is considered cell regeneration and was surprised to know that what the science has done with the cells of the departed can be considered a major part of growth , yet I agree to the monetary levels of what has come about for the study and really feel like the rest, that the family should and can be a part of the monetary values that surrounds these tests... they say , what is of value to another can be a blessing to another .
December 26, 2010 by suresh
hai i want the details of cell in humanbody and cmplet diagram with count cell
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January 12, 2011 by jstyle
The question of Henrietta Lacks's family receiving a profit from the research of HELA cells I think mis-states the real issue. More accurately, her family should be fairly compensated for the contribution that she has unwittingly made to the field of medical science and research. On one hand the medical community speaks of the invaluable resource of her cells and the multi-billion dollar industry it has created as well as to the field of medicine, yet in the same breath, they say there is no obligation or responsibility to provide financial/monetary compensation. This is inexcusable, unfair and totally outrageous. I hope her descendents find justice because as of right now, they have not received any. There seems to be agreement with providing compensation to holocaust survivors, and Native Americans for the injustices then endured, and I think this is of equal measure. I hope someone will take up this cause and again, justice be served.
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March 4, 2011 by sandra
yes, especially, when the family can't pay their own medical expenses. this is injust in american.... someone should be sued....it'sdisqusting that drug and research companies are making millions off of this woman cells
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March 6, 2011 by Rick
The same thing that happened to Henrietta Lacks has happened to me. A major research hospital at a major university here in the United States discovered an antibody in my blood that kills a major virus. Major projects are underway to try to create a vaccine from my blood. I have recieved no compensation whatsoever and I am being billed for the spinal taps that were performed in order to steal my blood and stem cells.
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March 22, 2011 by Terdzungwe Sar
The argument is two faced: research is carried out on the material to provide a possible cure to the sufferer of a disease and in the process -bingo! someone somewhere hits a jackpot! The sad part is the sufferer of the disease almost never benefits from such research and discoveries. However they must be treated as ones who have contributed to an important discovery and not promptly forgotten! Such individual's relatives should as least receive part of the proceeds from the relatives body parts! After all in some parts of the world, organs or other body parts like blood, can be parted with for the financial gain!
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March 27, 2011 by Dominic Hayes
Dear Scientists, The whole medical science that is functioning today is completely wrong, it is pure garbage it must enter the bin as soon as possible. Please go to my blog http://dominichayes.webs.com or http://neuron.hpage.com and read the unbelievable truth about the Human Body and the Universe. Thank you, Regards, Hayes
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May 14, 2011 by Eileen
I do think Henrietta's family should should get medical help when need. For todays people no I don't think we should be paid for the cells or blood, etc.,but we should be told that our samples are being use for science and we should not have to pay doctors or hospitals to take our samples.
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August 29, 2011 by Melleny Hale
Much has happened in the half-century since Henrietta Lacks' untimely death. I really don't think that the researchers, themselves, who collected her cells could have imagined what significance they would have. Usually the first researchers to collect human specimens are people who may be attempting to advance scientific knowledge with very little monetary support. It may not be---as was the case with Mrs. Lacks' cells--- until many years later that private industry manages to figure out how to make the material into a business. One cannot necessarily predict the value that a material holds. While I support the idea that the Lacks' family should receive some compensation for what has become a profit-based enterprise so many years later, it should be noted that the regulations for patient consent have also changed radically in the intervening years. Now it is far more likely that the interests of the patients and their family can be exercised through the current system. But it may take many, many years before any value is realized, if any. There is a cost to supplying researchers with enough cells to study, carefully documented and maintained, most of which is paid for by our tax dollars through competitive grant applications by struggling researchers. Research activities are an entirely different ballgame from that of private industry. Only then was there any real issue of profit from Mrs. Lacks misfortune.
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September 10, 2011 by Linda
I am on page 20 of this book, recommended to me by my sis ( a cancer survivor). To be acknowledged & paid is long overdue.
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September 16, 2011 by Melissa
This was a fascinating book and really well written, interweaving the story of the Lacks family with the interesting science of cell research. I don't think people should be paid for their cell use as it will hinder research but I definitely think people should be informed that their cells, organs and/or tissue can be used. I had no idea this was the case until I read this book! Highly recommend this read as it will open your eyes to some very relevant issues and information.
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October 18, 2011 by fayme
I've had the opportunity to read the book that Skloot wrote and i honestly believe that the Lacks family should be compensated for any and all test that have been made using HeLa cells.
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