What Rebecca's Reading
- 'Serpent-Handling' West Virginia Pastor Dies From Snake Bite A “serpent-handling” West Virginia pastor died after his rattlesnake bit him during a church ritual, just as the man had apparently watched a snake kill his father years before.
- A Dispute Over Who Owns a Twitter Account Goes to Court How much is a tweet worth? And how much does a Twitter follower cost?
- A dollar badly spent: New facts on processed food in school lunches In a collaboration between The New York Times and the Investigative Fund, reporter Lucy Komisar delved into the billion-dollar business of the national school lunch program and found some unsettling news.
Archives by Date:
- May 2012
- September 2011
- August 2011
- July 2011
- June 2011
- May 2011
- April 2011
- March 2011
- February 2011
- January 2011
- December 2010
- November 2010
- October 2010
- August 2010
- July 2010
- June 2010
- May 2010
- April 2010
- March 2010
- February 2010
- January 2010
- December 2009
- November 2009
- October 2009
- September 2009
- May 2009
- April 2009
- March 2009
- February 2009
- January 2009
- December 2008
Archives by Subject:
- Animals
- Appearances
- Assistance Creatures
- Bioethics
- Book Related
- Book Reviewing
- Cervical Cancer
- Disability Rights
- Education
- From the Archives
- Genetic Privacy
- HeLa
- HeLa FAQs
- History of Science and Medicine
- Housekeeping
- HPV
- Infertility Treatments
- Media Appearances
- Media Watch
- Medicine & Health
- Neurology
- News
- Paperback Edition
- Personal
- Policy
- Politics
- Press
- Publication News and Followups
- Publishing
- Race and Medicine
- Reviews
- Science & Money
- Science Writing
- Sketchy Science
- Testimonials
- The Henrietta Lacks Foundation
- The Immortal Book Tour
- The Immortal Life of Henrietta Lacks
- Tips
- Toxo
- Uncategorized
- Weird Science
- Women and Science
March 4, 2011
Scientists! Do you work with, study, or have thoughts about HeLa cells? What understanding do you most want the non-scientific community to come away with after having read The Immortal Life? Share your story.
After Rebecca Skloot’s book about Henrietta Lacks was first published in spring 2010, scientists and science writers of all disciplines praised the book for the quality of its research, its reportage, the ethical arguments it raised, and for the compelling way in which it brought to light the very human story of cells that most knew only by four letters—HeLa.
Here are some of the things scientists have said about The Immortal Life of Henrietta Lacks. If you have used HeLa cells in the course of your professional or academic career and have read the book, please add your thoughts in the comments thread below. Tell us about the research you’ve done using HeLa cells—how has HeLa contributed to your science? What have you learned from them? This is a forum for scientists to share their thoughts and their own HeLa research with each other and the general public. It’s also a place for readers to post questions for scientists about HeLa cells. If you would like to submit a video testimonial, or footage of your research, please email us at renee@rebeccaskloot.com.
“I would like to say a big thank you to Rebecca Skloot for giving Henrietta Lacks the recognition she deserves in the world outside of the scientific community. Her story demonstrates so clearly how one person can make an immeasurable difference to the whole world, irrespective of their age, race, religion, education or social standing.
Having worked in clinical research, where ethics are such an integral part of a study, I was horrified at the lack of control over research that existed previously. I am truly grateful that we live in more enlightened times, where the subject’s wellbeing is paramount.
My heart goes out to the Lacks family, whose emotional turmoil has been so compassionately described. I cried for Deborah, my heart ached at the descriptions of Henrietta’s last few months of life.
I think back to the vaccinations I have had during my life, having never previously thought of how those drugs were developed and tested. I think by now, all of us have likely had some medical treatment that has been influenced by HeLa, and it is a humbling thought. I am just one person, my name just letters on a page … but without Henrietta Lacks and others like her, who knows if I would still be alive now to write this?
One of the most thought-provoking books I have ever read, I would like to thanks the Lacks family for sharing Henrietta with us, willingly this time.”- Renata Davies, Radiographer, UK
“Working as a research assistant at the University of Chicago, I worked with HeLa cells as part of the early research of the role of T-cells in HIV. [I was told they were cells from a woman named Helen Lane and the cells were unique because they were, essentially, immortal]. It never occurred to me that the cells might not have been given voluntarily.
Later, as a pathologist at the University of California, I collected, sliced and diagnosed thousands of specimens each week – and I often wondered how they were disposed of or stored after we had what we needed from them from a clinical and research standpoint.
Currently I work in drug and vaccine development – and I follow very strict legal, ethical and company guidelines for each and every patient interaction/specimen. International ethical and Human Subject Protection guidance’s (including the Nuremberg Code, the Geneva Convention, the Helsinki Declaration, etc.) and the HIPPA law have significantly shaped and influenced my understanding of the complex issues involved in research that involves any aspect of human participation.
Your book (in addition to being a moving story of a family treated poorly by science, educators, medicine and the government) not only provided me with deeper insight into how we got into the mess we are in, but also gave me an understanding of several surrounding issues which are not commonly known or discussed.
I am still not sure how academia handles patient specimens which are not specifically collected for research purposes; in addition, I am sure there are many other specimen-storage aspects about my current work in development of which I am unaware. However, now I am significantly less comfortable with this fact than I was before reading your book. Let’s hope your book continues to make more doctors and scientists uncomfortable with the status quo. Therein lies the path towards progress.” – Jessica Eisner
20 Responses to “Scientists! Do you work with, study, or have thoughts about HeLa cells? What understanding do you most want the non-scientific community to come away with after having read The Immortal Life? Share your story.”
Leave a Reply
The Henrietta Lacks Foundation
The Henrietta Lacks Foundation strives to provide financial assistance to needy individuals who have made important contributions to scientific research without their knowledge or consent.
I earned a PhD using HeLa cells in my research back in the 1980s. Originally I was told that the cells came from a woman called Helen Lane, but I did my own research and found the real story behind the cell line. I have always felt a deep respect for Henrietta lacks who made my own research, and that of scientists all over the world, possible.
Reading Rebecca Skloot’s book broadened my understanding of the road traveled by the Lacks family, but it also reminded me of why I went into research in the first place. That sense of excitement, that willingness to keep working in the lab night and day, never grumbling about having to look after my cells on holidays, was all due to the pursuit of knowledge that might be the key to a breakthrough. (When everything was going well in the lab one of my supervisors would say that Goddess Fortuna had come into the lab and no one goes home!) I know scientists, like George Gey, in the 1950s were not sensitive to the need for informed consent, but I believe they thought they were working for the “greater good”, in their own naive way.
This book should serve as a reminder of the importance of respecting the patient without condescension and maintaining the pursuit of knowledge as the goal. The trend towards commercialization of medical research is frightening and raises serious ethical questions that must be addressed with compassion to all concerned.
As a research scientitst who began using HeLa cells about 30 years ago, I greatly appreciate the story behind the HeLa cell line, the very humanizing nature of bringing the family’s perspective to such an important scientific contribution. Not to mention the historical perspective. Excellent book!
New chapter: this was just published in Nature: (link below)
Most popular human cell in science gets sequenced:
The HeLa cell genome is riddled with errors, raising questions about its continued use.
by Ewen Callaway
http://www.nature.com/news/most-popular-human-cell-in-science-gets-sequenced-1.12609?WT.ec_id=NEWS-20130319
Hello,
Just finished reading the The Immortal Life of Henrietta Lacks and it touched me in various ways.
First, I was stuck to every page (actually, to the screen. This was my first book read on a electronic book reader – the Nook – a neat little device). Couldn’t put it down. Being one with the attention span of a flea, it astounds me any person can devote 10 years of her life to a single subject. Amazing. Even the acknowledgment section was a feat. Just keeping track of all the people to thank must have been one heck-of-a task.
Anyway, being an OR tech for the last 5 years, I’ve handled hundreds of tissue samples and am quite aware of the importance of maintaining sterility. This really connected me to the book. But it also caused me to wonder: what really does happen to all those “specimens” ?
Throughout the book, however, I really wrestled with the notion of who does actually have the most vested interest in a specimen. Is it the public? The researcher? The patient? I think it really comes down to the motive. And what is the best and highest use for any tissue sample? Of course, it cannot be anything but diagnosis of a condition (actually or potentially) affecting the patient. So the patient has the most vested interest. The sample serves the patient. No one else.
From what other persepctive could we look at tissue “ownership”? If we were to look at the entire universe of medical study, we might say, reasonably speaking, that at any given moment in time there could be, say, 1,000 tissue studies going on. Of those studies how many end in failure, or negative, with no useful results? Although I don’t really know the answer, I would venture a sensible guess of most end up a waste of time (unfortunately). Perhaps 50 might show some promise. But here’s where things get a little dicey. “Promise” is the operative word here. Actually, a better word is “suggest”. “Study results SUGGEST a possible breakthrough. More study is needed.” And here’s where the money comes into play. Inventors come rushing in changing the motive from one of passion to one of profit (gotta keep these guys happy). The whole dynamics now of why, and for what purpose, switches. It’s only natural. So, how to keep things honest?
One simple – and signed – informed consent should do the trick. Before every surgical procedure while the patient is still lucid he/she receives a notice. It could go something like this:
“This medical institution cannot guarantee any part or all of any tissue sample removed from your person will not be used for commercial purposes. Therefore, you have a right to approve complete disposal of tissue from your person without concern for loss of “ownership”.
Check where appropriate:
I (patient) ___do ___do not wish to dispose of any tissue specimen removed from my person.”
Does it need to be more complicated than that? Maybe not.
Really liked the book. Very thought-provoking.
I’m a geneticist by education, spending 10 years doing bench research before transitioning over to clinical research for the past 10 years. I had never heard of this book until my mom (who is not a scientist) asked me last Christmas if I knew anything about HeLa cells (she read your book as part of her book club). I said, “Yes, they came from a woman with cancer whose name was ‘Helen Lane’, and I used to work with them in the lab”.
I graduated from college in 1991, and was still learning the erroneous origin of HeLa cells. Obviously, even after culturing cells in the lab for years, I did not learn the true identity of the “donor”. I commend Rebecca for a well-written book – one that opened my eyes to the terrible research practices that have (and perhaps still do?) existed. I have always defended scientific researchers, but realize not all act with the utmost integrity.
I find myself having mixed emotions about this topic – being a cancer patient myself, I’d gladly provide the means for science to be advanced if I could, but I would expect that I would at least be requested to provide consent, and I’d love to actually know (or have my family know) the impact my tissues had on medical advances.
As my husband and I sat watching “The Help” last weekend, I said, “You know, the Immortal Life of Henrietta Lacks would make a great movie.”
I am in my first year of a Molecular Biology PhD program and I am currently working with HeLa cells for the first time. I read The Immortal Life a few years ago and knowing the story behind my cells has given me a strange sort of reverence for them. It is impossible for me to work with my HeLa cells without recalling portions of the book. I am honored to be playing even a small part in Henrietta’s story.
Do scientists have any way to detect what type of HPV caused her cervical cancer?
As an operating room nurse, I truely appreciate the scientific advances made by the experimentation of the HeLa cells. The knowledge gained has truely been remarkable and will also continue in the future.
The sad thing about the book for me was Henrietta did NOT have to contract cervical cancer in the first place. Her HPV-18 infected cells were virulent according to the book. She was the victim of a sexually transmitted disease.
I want to comment — as a family physician — that the terrible photo at the Hospital for the Negro Insane of Deborah Lacks’ sister Elsie makes me wonder if Elsie was having a bad allegic reaction. The book described several times Deborah’s having allergic reactions with hives, lip swelling, etc. Just wondered what others think…
I was amazed to learn of the role HeLa has had in understanding HPV’s role in causing cervical cancer. Thank you for the good book.
My dad died of colon cancer in 1975 and he donated his body to cancer research at University of Texas at Galveston. How would I know if the school made any money off of his cells?
Regarding the issue of patient rights I wonder if this scenario might be relevant to the conversation; If I made a unique paint and learned that it was being used by an artist to create wonderful works of art, would I have any right to any compensation based on what he created with my unique paint?
I’m a scientist and have used HeLa cells often. “The Immortal Life” changed a few things about how I think and even experiment. First of all, I stopped saying “Helen Lane,” which I’d said since grad school! (*blush*) More importantly, though, I was able to reassure a student who pricked herself with a pipette full of HeLa cells that she wouldn’t get cancer… based upon the data taken so unethically in the era of prisoner/dying patient experiments. I also now take much more seriously the idea that many other cell lines are contaminated with HeLa, or may in fact just be HeLa. I’d seen the study suggesting as much, but never gave it much thought. “The Immortal Life” has a spot of honor in my laboratory, and is now stained with DMEM. What higher praise can I give?
I had heard about this book and then forgot until a coworker had it on her desk. I began reading and spent all day, my next day off reading… Awesome. It dug up many thoughts and emotions I had not let my mind go to before. I had learned in college biology that HeLa’s came from a woman named Helen Lake. Years later I was growing Liters of these cells every week. When I did think about HeLa, I imagined an older white woman, who had led a full life and had donated her cells for research ( my mind telling itself what it wanted to hear). There were newer cell lines I worked on, most of which I knew the origin of, but by far HeLa’s dominated. They are awesome cells to grow and work with- With what I know now of Henrietta, I can’t help but feel some of her spirit makes those cells what they are- strong, resilient, adaptable. I have been haunted by the book, and have reviewed and examined my career in research. My mind would never let me go beyond a certain point before. Telling myself that my research was for the “better of humankind” but was it? or simply experiments that may have satisfied my own curiosity and ego… I suggest this book for any biologist/researcher
I would want lay people to come away with the realization that much of the technology they enjoy today was at the sacrifice or behest of someone real. HeLa is a unique case in that what today may be an anonymous donation of choice was a non anonymous, un-consented “donation” as such, I believe we should give Henrietta and the Lacks family their due. I am ashamed that Academic institutions, Pharmaceutical companies, and biology supply houses have not come forward-having worked most of my career at them. HeLa’s hold a truly singular and special place in research, everything after HeLa is owed to HeLa. I continue to question my research career trying balance the human cost vs. the scientific payoff. Thank you Henrietta and the Lack’s family.
The Immortal Life of Henrietta Lacks is a remarkable book for several reasons. HeLa cells are a long thread -like DNA in evolution- running through medical research since the 1950s. As with the famous E. coli bacteria, this cell line is also typically mentioned in introductory college biology courses, usually when the ironic and strange immortality of lethal cancer cells in culture is first explained to students. Moreover, even in a golden age of fine, semi-popular science writing, The Immortal Life of Henrietta Lacks stands out ahead of most other science books. The subject of the book shifts across a great stage, from cell to human to humanity. It is in every sense a very well-written book. The Immortal Life of Henrietta Lacks should be prized for both its subject and for excellence of execution.
I have worked with HeLa cells in culture in the research laboratory, back in the time when we only knew these derived from a “patient” and assumed we would never know who that person actually was. When this book was published, I was thus intrigued by the information it conveyed and learned a great deal from reading numerous reviews. The book went on my mental “must read” list, but alas, that is a very long list.
When the book came into my hands, however, I had turned only a few pages when I realized that this was a remarkable book which told a remarkable story. It was compelling reading, and I recall how reading it occupied every spare moment for the next few days. A wonderful book, it was also wonderfully disturbing in terms of some of the questions it put forward.
Although I specialize in the study of the relationship of science and religion, my broader interest in is the interaction of science and society as a whole. One major point I try to drive home, both in my regular life science courses and in specialized courses such as “Science and Civilization”, is that science is a human institution, and as such, deeply woven into the fabric of society. Even “pure” research -knowledge sought for knowledge’s sake- is not an abstraction set apart from human life; scientific research is never carried out in an amoral vacuum under some bell jar which excludes ethics.
This point should be particularly clear in medical sciences, but The Immortal Life of Henrietta Lacks shows that even here, in what should be the most humane of sciences, science can easily become immoral when it seeks to be amoral.
This book is filled with instances which would be good jumping off points for discussion in any classroom. For example, the cells were harvested without Ms. Lacks knowledge or consent. That this was “customary” for the time is a point of historical fact. While this is an explanation, it is hardly a solid defense, and it’s disturbing that many people still don’t understand this distinction. In the Antebellum American South, it was also customary for white people to “own” black people. As G. K. Chesterton wrote deftly and with great perception, this is like arguing that something is right on Tuesday but wrong on Thursday.
Of course, the appropriation of Henrietta Lacks’ cells (however wrong) is not the equivalent of the high moral crime of slavery. But the comparison still shows the kinship between the two immoralities, and the danger accompanying justification via a stance of moral relativism. Moral absolutes are notoriously difficult to ascertain and bring their own burden of worries, but such relativism lies on a dangerous, icy slope.
Science needs and can withstand a critical eye, which functions like a healthy pruning on a tree gone slightly wild and awry. Science and medicine are pursued with passion by practitioners, and are therefore hardly bloodless (in a good sense). As in art passion is the engine which drives scientific inquiry. So it is good to read a book dealing with science which tells the story earnestly and emphatically. Tempering this passion, however, is the sadness at knowing a woman is dying, and will be lost to her family. She resurfaces later, in their lives and now ours, in a manner which is wholly unexpected and troubling as well. Yet on balance, there is some sweetness to counter this bitter taste: her deadly cells bear her name so she will be remembered. Even as “HeLa cells”, we knew they came from a person who had fought a battle and died. In this book, her face and life become clear and more and more distinct to us as we pass across the pages, like an old Polaroid photo slowing developing before our eyes.
By the book’s end, the woman has become more than the cells, more than the letters “HeLa”. She is Henrietta Lacks. To be mourned, to be missed. Surely, Whitman will not begrudge the borrowing and bending of a line here. “This is no book; who touches this touches a woman.”
Weee. Thanks for writing the book. The big knot in the back of my mind on why name this powerful cell line-HeLa! The never published term paper which I wrote thirty years ago, finally came to light! Questions to teaching assistant/professor etc. on why named this cell line-HeLa, finally demistified! No wonder they kept their mouth shut! CONFIDENTIALLITY folks! If this multipotent/multiracial cell line was made public, doubt very much that there will be as much scientific studies discovered !
Anyway, invincible, multifunctional, multipotent blop of cells should not be overlooked as harmless! All cells mutate before their cycle is time to retired.
Why not tell me the details
Next time there might not be pure HeLa cells to work on, no more Hybrid Vigors either due to HIPPA rules or regultions.
Thanks the Lacks family for willing to contribute.Now I wonder when, there will be list on the blood test results which will give a questionable range of the thirsty ones!
Hi
I am a neurologist and I too have read a lot about He La. My mom passed away last week and even in this era she had the same fate as Henrietta. Her cancer was detected rather late, had radiation treatment, has metastasis all over her intestine and she was in intense pain. I am from India and here the screening evaluations for any kind of malignancies are minimal. I would like to start a foundation in my mom’s memory and spread awareness about early detection of preventable cancers. Can any body give me some guidelines to go about? I was reading Rebecca’s book on Henrietta while my mom was going through her illness and finished the last page on the day before her demise. I was crying all the way while reading the book. Its a great effort….
Raj
Raj,
My heart goes out to you in your loss. What a fine compliment,however, to your mother, that she raised a son who can think unselfishly of other people at a time of deep personal pain. It says much as well about your compassion as a physician.
I am not sure how to go about this. Let me think and check with a few people. But your idea is so very worthwhile -indeed, noble- that it should find a way into existence.
The great William James maintained that any emotion we feel only has the validity we give it by performing some action. You’ve done that action by writing here, and you have got my attention concerning a major need to bring cancer screening services to many women.
Now how do you get the attention of many other people, and the right people? That is the next step.
My thoughts and prayers are with you.
Brian
Dear Brian,
Thanks a lot for the encouraging words. I am spreading the message as much as I can and some non-governmental organizations are showing keen interest. I hope some thing fruitful will turn up. Shall let you know
with warm regards
Raj
I read this book and have worked with these cells and I find eerie in retrospect, but since a diagnostic company asked me to use un-identified ‘heart homogenate’ sold by Sigma I realized that sicence, seeking ‘truth for its own sake’ did not have eternity as its proper subject and that each body had an ‘intentionality for eternity’ built in by God. Thus science could only lead to a certain corruption of ‘human’ when it strove to study the body using forces, tools and instrumentation and went to study the structure of intellect, moving on to environmental microbiology. To me technology and people who were ‘carrying’ it in their conception and application were in error. I’d like to offer two quotes:
“We must distinguish between error and the person in error: the error must always be rejected while the person never loses the dignity of being a human person.” (Guadium et Spes a. 28).
“The building plan comprises not only directions for the assembly of the proteins through the translation of the message that is stored in the nucleic acids, but also the directions for the construction of the translating mechanism. To put it metaphorically: Besides the directions for assembling an automobile, the plan for building the automobile factory is transmitted as well.” – p 35 (Creation and Evolution – A Conference with Pope Benedict XVI in Castel Gandolfo)
The DNA technologies that in reality date back to 1800′s are often teaching a mutable humanity to pre-medical students. Something that reminds me of the chapter on ‘heavenly bodies’ is “The Incorruptibles: A Study of the Incorruption of Various Catholic Saints and Beati.” by Joan Caroll Cruz that distinguishes between natural and supernatural incorruption – however this is not literally reading the Bible – but I would invite both the author and the Lacks family to this witness. There are PhD programs at John Hopkins on the history of science and medicine and I believe Rebecca would make an excellent candidate as her factual treatment and personal approach were a great read – I would read this author again. It would be interesting to see a follow up book and distinguish between the immortality of these cell lines from the bodies that are naturally and supernaturally incorrupt. I believe this reality would be of benefit to the Lacks family as they are Christian.
As a former electric industry analyst I was interested in the book’s reference to a contention that tracking cells to their donors throughout the research process, for the purpose of informing and/or compensating the donors should commercial use be found, would be an insurmountable task. I recall the successful efforts within the electric utility industry to develop a method of “e-tagging” electricity to identify the source and the user for the purpose of billing. Perhaps that method could be adapted for this other purpose. I suggest contacting Public Relations at the Bonneville Power Administration to locate people who are knowledgeable about the process. http://www.bpa.gov
I read about the interest the Lacks family had in how her cells saved babies so I will add one more part of how medical techlology was changed by the initial study and understanding of how cells work by studying HE LA cells. In the early 70′s blood banking was dependant on paid donors to provide antibodies to type blood cells. RH-negative mothers who had lost an RH positive baby had strong antibodies to RH in their blood. We were still reliant on “donors” to provide these antibodies in the late 60′s and early 70′s for blood banking purposes. Today, antibodies are cheap and abundant thanks to monoclonal antibodies. Blood banks even in small hospitals have access to them. They probably are not using HE LA cells to produce these antibodies, more likely from a cell line derived from Lymphs or T cells (MO cell line) but Henrietta’s cells were the queen bee that provided the basic research for all the other cell lines to follow. Today, we have purified MONOCLONAL anti-Rh antibody that is used to keep Rh Negative mothers from producing the antibodies that kill there babies while still in the womb. It is more complex than that — you can google Rho-Gam to learn the actual details. What should be comforting to you, as Henrietta’s decendants, is that thousands of babies were born, spared by Rho-gam, who would otherwise have died and been miscarried.