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    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.

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    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

    9 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.”

    1. denise p. says:
      February 26, 2012 at 7:04 am

      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.

      Reply
    2. Brian Mooney says:
      January 17, 2012 at 10:47 pm

      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.”

      Reply
    3. J says:
      October 12, 2011 at 3:51 am

      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!

      Reply
    4. Raj says:
      August 2, 2011 at 2:34 pm

      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

      Reply
      • Brian Mooney says:
        January 17, 2012 at 10:58 pm

        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

        Reply
        • Raj says:
          January 20, 2012 at 1:34 am

          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

          Reply
    5. Kristina says:
      June 24, 2011 at 6:48 pm

      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.

      Reply
    6. Mary J. Hollen, CPA says:
      June 23, 2011 at 12:17 am

      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

      Reply
    7. Michael Jirka, BSMT(ASCP) says:
      May 2, 2011 at 3:18 pm

      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.

      Reply

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