Illustration by David Plunkert
A young lab assistant attended an autopsy at the Johns Hopkins Hospital morgue on October 4, 1951. The assistant was Mary Kubicek. The autopsy was of a woman who had died at 31 from the metastasized cervical cancer that had so ravaged her there was scarcely an organ in her body not riddled with malignancies. Kubicek had never seen a corpse before and tried to avert her gaze from the face to the hands and feet. That’s when she was startled by the deceased woman’s chipped red toenail polish. Kubicek later told writer Rebecca Skloot, “When I saw those toenails, I nearly fainted. I thought, ‘Oh jeez, she’s a real person.’”
The real person was Henrietta Lacks. Much of the American public knows at least the outline of her story since publication of Skloot’s best-selling book The Immortal Life of Henrietta Lacks. When Lacks came to Hopkins for treatment of her cancer, a surgeon sliced away small samples of the malignancy and Lacks’ healthy cervical tissue for George Gey, the director of tissue culture research at Hopkins. By 1951, Gey was nearly 30 years into a quest to culture “immortal” cell lines: human cells that would reproduce endlessly in test tubes to provide a steady supply of cells for medical research. Gey had experienced little but failure when a Hopkins resident dropped off the pieces of Henrietta’s tissue. Soon after the malignant cells, labeled “HeLa,” were placed in culture medium by Kubicek, who was Gey’s lab assistant, they began to reproduce, doubling within 24 hours. They have never stopped. They now live by the uncountable trillions in laboratories and the inventories of biologics companies throughout the world, still robust after 60 years and perfect for all sorts of research. The HeLa cell line has been the foundation of a remarkable number of medical advances, including the polio vaccine, the cancer drug tamoxifen, chemotherapy, gene mapping, in vitro fertilization, and treatments for influenza, leukemia, and Parkinson’s disease.
The Immortal Life of Henrietta Lacks by Rebecca Skloot
Though the science and history in Skloot’s book are fascinating, they are not what has made it a national best seller. What has resonated with readers are the interwoven narratives of Henrietta Lacks’ sad life and her daughter Deborah’s pursuit of knowledge about the mother she never knew. And there is one more thing. Text on the front cover of Skloot’s book reads, “Doctors took her cells without asking.” The inside flap continues, “Henrietta’s family did not learn of her ‘immortality’ until more than 20 years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits.” A significant segment of the public harbors a deeply rooted mistrust of medical research. They do not trust physicians and scientists to be open and honest with them. They fear that the privacy of their medical records will not be respected. They believe that someone somewhere is making a lot of money off of drugs and biological products that were developed using pieces of tissue from people who now are entitled to a piece of the profits. The Immortal Life of Henrietta Lacks speaks to that skepticism, and above all is the vivid testament of how the Lackses feel they’ve been treated by physicians, researchers, journalists, and corporations. The book will not reassure those already suspicious that they are being used. Skloot says, “The thing that I hear more than anything [from readers] is, ‘We want to know what’s going on. We don’t want to feel like someone is doing something behind our backs.’” People want their individual humanity acknowledged and respected. Physicians and scientists and ethicists know this. They also know that doing the right thing, which can seem so straightforward to the public, gets more complicated all the time.
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Trackbacks
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Thanks for this thought-provoking piece. And bravo to you and to Hopkins for taking on something that is/could be so thorny for the institution.
This is a fascinating tale, both heartlifting in the good done to mnedical science and shaming in its account of the treatment of the family of Henrietta Lack. I should have liked to learn one thing though: in what way are Johns hopkins university now supporting Henrietta Lack’s family?
They aren’t. That is why this has turned into such a debate of ethics. The majority of the public feels that each person should be compensated for their contribution to the medical field, especially if their cells, tissues, information, etc. have made the industry millions or even billions of dollars. Still, uninformed “donors” receive no pay. That is because many “donors” do not know (were not informed by their doctors) that their bodies are being utilized by science. Case and point, Henrietta Lacks. This is the essentially the debate: What is the greater good? Paying the public for their contributions to the advancement of medicine and science, or continuing to take samples from patients without asking as to not risk a patient saying “no,” thus preventing such medical advances to occur.
I just finished “The Immortal Life of Henrietta Lacks” and was fascinated by the entire story. Her cells have helped medical science “push the envelope” and discover so many cures. How one woman’s contribution of cells over 60 years ago (be it non-voluntary) still exists today is mind boggling. However, it is disheartening to know that although Henrietta’s contribution to science has been paramount, her family still is unable to pay for medical attention. I hope that John Hopkins will “step up to the plate” and do the right thing by them. Thank you Rebecca for writing such a wonderful book!
Her family is getting the education and dental work, as well as their truck fixed due to the funds from the Henrietta Lacks Foundation set up by Rebecca Skloot’s royalities from her book.
Sue, the education, dental work and a fixed truck is NO comparison/adequate means of compensation for their family’s contribution to the medical community and patients around the globe. At the VERY LEAST, JHU can provide her children with comprehensive medical benefits for the duration of their lives…? Just a thought…
This article nicely describes and discusses issues related to access of personal information from medical records, use of tissue samples, informed consent, etc. These are issues that are raised, debated, and are of cocnern to many hospital administrators and IRB/EC.
Johns Hopkins should consider providing free health care to Henrietta’s descendents as a way of appreciateion of the use and distribution of her cells.
I agree. I just finished the book and Hopkins should offer the family descendents free medical service for their lives to make up for the way Henrietta and her family were treated and suffered for 60 years.
How can Johns Hopkins not give the family their due and provide them with free medical care? What is the point of this article other than telling us what we already read in the book? If Johns Hopkins does not provide the care the Lacks family deserves they are adding to the injustice immeasurably.
Suggesting that this family be the exception to the great American way is facile.
If the Johns Hopkins owes free health care to this family, why not every family from every patient who might have donated some piece of themselves that may have contributed in some way to something beneficial? How would Hopkins and all the other hospitals afford to stay open?
Perhaps the market driven system should not apply to ensuring citizens have adequate healthcare. Why should doctors and pharma companies get rich while most of the population cannot afford good health?
Henrietta Lacks’s children and descendants had their blood and tissue samples taken with no knowledge as to why this was being done. This was not done “for the greater good.” That expression covers a world of bad behavior. Deborah (daughter) thought she was being tested for cancer, and when she called to find out the results of the cancer test, no one knew what she was talking about.
The case of Henrietta Lacks involves an extreme violation of privacy (“HeLa”); lack of any kind of consent, particularly when talking ‘over the heads’ of the participants. The idea that a college education would have helped in comprehension is erroneous. A science background would have helped, for instance, not a BA or MA in Creative Writing.
Realistically, the family was lied to. Legally, when Henrietta’s cells were removed and place in the petri dish, they were no longer her cells, according to the California Supreme Court, which ruled on a similar case in about 1986 (John Moore and the “Mo” cells).
No, donors like myself do not need to be compensated for the use of our cells. People like the descendants of Henrietta do need a modicum of respect shown to them because their cells were used also. Medical care is a small drop in the financial bucket for this family. We know who HeLa belonged to; you do not know who I am or which cells are mine. There is a universe dividing the two.
Ethics/genetics
What was the first word?
I seldom leave a response, but i did some searching and wound
And, if you are posting on other places, I’d like to keep up with anything fresh you have to post. Would you list of all of your social pages like your twitter feed, Facebook page or linkedin profile?
up here Henrietta Lacks: her cells – and ethical issues – live on
| Johns Hopkins Magazine. And I do have a few questions for you if you usually do not mind.
Could it be just me or does it look like some of the comments appear like left by brain dead
folks?
My heart aches for Ms. Henrietta Lacks’ family on many levels. It is my hopes that John Hopkins and all those who have profited from Ms Lacks’ cell will compensate her family: at least that will ease the pain for the family of the unethical treatment of their mother. It is one thing to be an organ donor by choice, but to take a part of one’s body and give it immortality, while the body itself is dead is what horror movies are made of.
I agree with so many others here who have stated that at the very Least JHU should be providing free health & dental care to Henrietta’s children, and I’ll add grandchildren. In addition to that some kind of compensation is in order. Adding to that, how do you put a dollar value on so many things in research that were ground-breaking firsts that have saved so many lives ?….None of them possible without Henrietta’s cells. I just don’t have any words for the injustice done to her family. A large part of that being repeated omission which is often considered as grave as Lying. For them not to know anything at all for over 20 years is unconscionable, and then still not told about All of the intent of taking samples from the family.
God bless Skloot for starting the Henrietta Lacks Foundation that offers some relief for the family from the book’s royalties.