Thursday, February 13, 2014

The Immortal Life of Henrietta Lacks

Book: The Immortal Life of Henrietta Lacks
Author:Rebecca Skloot
Edition: eBook from library
Read: February 2014
595 pages
Rated:4 out of 5

Synopsis:
There are four story lines interwined in this book:
  • Henrietta Lacks, the women whose line of cells lived on beyond all known boundaries. Through the use of her cells, scientists where able to create scenerios  and test them against human strains. A wide assortment of cures and medicines have been created through her cells. She died before knowing that her cells taken, let along being used. She nor her kin were compensated for the use of her cells.
  • Deborah Lacks, Henrietta Lacks daughter. Henrietta Lacks died when Deborah Lacks was four years old. Deborah Lacks whole life was spent trying to understand who her mother was. Then when she found out about her mother's cells, she then tried to understand what this meant-she did not have much of an education.
  • Rebecca Skloot is the author of this book.This book is as much about Skloot as it is about the Lacks. Her story is interwoven in the quest to understand who Henrietta Lacks was and what her cells were being used for. Also the Lacks be southern black did not trust any white person, so the story has a great deal of Skloot understanding how to gain the trust of those who have felt betrayed.
  • HeLa Cells, the cells which came from Henrietta Lacks. Without them, our research on cancer and a whole wide range of drugs and remedies would be stymied.


Thoughts:
The two themes which emerge right from the start of the book are:
  1. who was Henereitta Lacks, the person where the HeLa cells came from?
  2. should the Heneretta Lacks, or her descdents, recieve compensation for the cells?

A statement in chapter 3 says that in the 1950's, it was thought that since a person was receiving free medical care, it was ok to do research on them, even without obtaining their consent. What is the morals here? To me, there is two seperate issues here. First, providing medical assistance for those in need is its own good. The second is that assisting science to discover new remedies is also a good. Should the two goods be coerced together, one as the condition of the other? The answer is no. Coercion to do good, may produce results, but a by-product is the damage to the person. It is the same road the Nazi's took to do their forced experiments. To clarify, I am not calling those who think this Nazi's, but that there is similarities of thought, which even if there is currently restraints on scope today, we have all seen how easily those restraints can be eased or removed.

I am not sure what informed consent would have looked like in Henrietta Lack's case for the use of her cells. I suspect that it becomes one more form to sign without reading at the hospital or doctor's office.  With Henrietta Lacks' education level and the complexity of science, how could Lacks know what she was signing away? With the complacity of patients at that time, I think consent would have been almost automatic.

Are there other cells now besides HeLa cells which are in use, like the HeLa cells are? There are two other people mentioned, but they seemed rather specialized. Seems like the author was saying that HeLa is close to being unique. Other cell lines will live, then die.

What parts of our body do we own? Fifty years ago, this would not even be a question, because it did not matter. Our bodies was all that there were. Before HeLa, a persons cells would die too soon. Now there are banks of cells. Who owns them? We cannot say what was part of us is always part of us. What about blood from a cut? The question seems more concerning the commercial value rather than what makes us a person. Cells removed from our bodies due to surgery or blood testing or biopsy, who do they belong to? Should we even be concerned? Now that we can tell about a person from their DNA, there is also a privacy factor as well. Sounds like from this book, most cells do not have any commercial value. And probably if it does, you do not want it to be-it is because you have some rare condition. This is the interesting cell lines have uniqueness to them, something like cancer or an unknown origin.  I think that first, there should be nothing which compromises the image of God in us. Second, before parts of us leave our bodies, we should understand what is going to be done. Then it is up to us to decide what we want to do. As David Korn said, what are we going to do, refuse an emergency appendix operation while deciding on having a surgery?

Nuremberg Code:
  1. The voluntary consent of the human subject is absolutely essential. This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him/her to make an understanding and enlightened decision. This latter element requires that before the acceptance of an affirmative decision by the experimental subject there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonable to be expected; and the effects upon his health or person which may possibly come from his participation in the experiment. The duty and responsibility for ascertaining the quality of the consent rests upon each individual who initiates, directs or engages in the experiment. It is a personal duty and responsibility which may not be delegated to another with impunity.
  2. The experiment should be such as to yield fruitful results for the good of society, unprocurable by other methods or means of study, and not random and unnecessary in nature.
  3. The experiment should be so designed and based on the results of animal experimentation and a knowledge of the natural history of the disease or other problem under study that the anticipated results will justify the performance of the experiment.
  4. The experiment should be so conducted as to avoid all unnecessary physical and mental suffering and injury.
  5. No experiment should be conducted where there is a prior reason to believe that death or disabling injury will occur; except, perhaps, in those experiments where the experimental physicians also serve as subjects.
  6. The degree of risk to be taken should never exceed that determined by the humanitarian importance of the problem to be solved by the experiment.
  7. Proper preparations should be made and adequate facilities provided to protect the experimental subject against even remote possibilities of injury, disability, or death.
  8. The experiment should be conducted only by scientifically qualified persons. The highest degree of skill and care should be required through all stages of the experiment of those who conduct or engage in the experiment.
  9. During the course of the experiment the human subject should be at liberty to bring the experiment to an end if he has reached the physical or mental state where continuation of the experiment seems to him to be impossible.
  10. During the course of the experiment the scientist in charge must be prepared to terminate the experiment at any stage, if he has probable cause to believe, in the exercise of the good faith, superior skill and careful judgment required of him that a continuation of the experiment is likely to result in injury, disability, or death to the experimental subject.
                      From Wikipedia's entry on the Nuremberg Code
Skloot has a chapter, 17,  on the status of research ethics concerning humans at this time. One of the uses of the HeLa cells was to inject them into humans, usually without their consent.

Even more basic than if there should be informed consent is the question, Is is moral to inject humans with something potentially toxic for research purposes? This also begs the question of how do you know when a treatment will cause harm instead of good? Such as a diabetes experiment involving tight blood sugar control. The experiment was stopped because a larger than normal amount of death than normal.  From The Person and The Common Good, Jacques Maritain says that the privilege connected with the dignity of the person is inalienable, and human life involves a sacred right. Whether to rid society of a useless member or for raison d'état, it is a crime to kill an innocent man. It is a crime to doom a prisoner to death in order to test some drugs which may save thousands of the sick. Chapter IV





Evaluation:
   Skloot writes a book combining both a human interest story with explanations of cellular science. This is done well. A person may quibble that there is too much Skloot or not enough science in this story, but I think part of the charm of her story is making the concepts available to those who have not had more than an eighth grade biology into a very technical field.

She is a science reporter and it shows. Her reporting goes from being naive about a white, seemingly affluent, woman trying to report a story on dirt poor urban, distrustful blacks.  She has good technique in her writing, the style she chose allows her to weave the story from the current to the past; from self to family to the HeLa cells.


Notes from my book group
  1. Why did you choose this story for the group to read?
  2. What is the story? Who was Henrietta Lacks? How does Skloot go about creating this story? Do you think that her becoming part of the story aids in understanding the story or does she get in the way of the story?
    1. Skloot seems to be on an ethical quest. Deborah Lacks wants to understand what happened to her sister, Elsie as well as Henrietta.
    2. Without Skloot's in the story, this would have been a dry book. Her inclusion gave it a feeling of being personal. Also it has a tendency of drawing in a white audience into a black world.
  3. With Henreitta Lacks education level, what would informed consent look like? Particularly if the person does not understand the terminology or implications?
  4. The Lacks family was not compensated for her cells. How fair and/or moral was this? By what standards? What would fair compensation look like? What compensation did George Gey receive? Gey did not seem to benefit directly from the HeLa cells, but others did. 
    1. One thing which happened is the lacks were not treated how a human would wanted to be treated like. They were treated as objects, not thought about, but used.
  5. Have any of you been the subject of medical research? What kind of information was shared with you?
  6. When does the cells from your body end being part of you?
  7. There was not consent on using the cells from her biopsy or blood test.When you last had a procedure or blood test, did you sign anything concerning the use of your cells from your body? Would you give blanket consent? How would you react if your body tissue was used todo research on something you did not support, such a better way to perform abortions, DNA associations with intelligence, or better nuclear weapons?
  8. In this story, the Lacks' privacy was somewhat maintained, but for certain early publications where a close approximation of her name was released.  In some ways this seemed to work against the family, particularly in knowing what was going on. Was there a sense of privacy or conspiracy or happen-stance which kept this information unknown? What was the prevailing privacy concerns at the time? What conditions hindered the family from finding out about the HeLa cells and how they were being used? Could the use of her cells have been stopped at the time? Now?
  9. It has been one of my thoughts that judging another time and cultures morals and actions by the 21st century standards and laws is wrong. That there needs to be a judgement by what they knew and what they could have known.  By what standards should we judge Gey, John Hopkins Hospital and Howard Jones? How do you think they would have been judged at the time? In 100 years?
  10. With the HeLa cells, we saw how unwittingly cross-contamination could occur. In general, is this only a concern in the lab? Should we be concerned with the generically modified plants? What would be the concern?
  11. Skloot related several medical research projects where either informed consent or the experiments were of questionable morality, such as the Tuskegee Gonorrhea Experiments and the Ohio Prison experiments. From Skloot's view, this was standard procedure for the day. What was the rational for using these people as subjects? How do you conduct risky, potentially life saving experiments? Example, tight blood sugar control sounded like it would be good for diabetics, instead it caused more deaths. Or the Stanford prison guard experiment. How does the Nuremberg Code fit in? The current NIH Human Experiment Standards? Was the HeLa racist like Sloot claims?(311)
  12. Would you be in favor of a DNA bank to identify you in screening for employment, crime, or health anomalies?
  13. David Korn of Harvard says that people are morally obligated to allow their bits and pieces to be used to advance knowledge to help others.(506)  Agree or disagree? Maritain notes that a forced common good is no longer part of the good.
  14. Deborah's sister Elsie was put into an insane asylum, it sounded like for both hers and her family's good.The asylum in many ways seems a bit barbaric. How has our treatment of those with needs like this changed?
  15. From the book's study question: Deborah makes a statement saying, Like I'm always telling my brothers, if you gonna go into history, you can'd do it with a hate attitude. You got to remember times was different. Is it possible to approach history from an objective point of view? If so, how and why is this important especially in the context of Henrietta's story?
  16. In chapters 35 and 36, Skloot relates the religion of the Lacks family. Does Skloot feel comfortable around their religion? She tries to relate it to her science. How successful is she?
  17. From the book's question: Religious faith and scientific understanding, while often at odds witha each other, play important roles in the lives of the Lacks family.  Gary's questions: What part does religion play in the Lack's family?  Is it ever shown to be at odds with what happened to Henrietta Lacks? The larger question is there conflict between faith and science?
  18. One of the things Skloot teaches in her writing class is structure. She says that she wanted my book to read like a novel but be entirely true. How would you say this book is structured? Does she get the voices of Black America right?
  19.  This is a story which is put together over 10 years. I am guessing she is about 23-25 when she first started trying to track down the HeLa cell story. How does she mature in telling of the story? In her approach to talking the the Lacks family?


New Words:
  • Virology(167): Virology is the study of viruses – submicroscopic, parasitic particles of genetic material contained in a protein coat
  • Analesgia: An analgesic, or painkiller, is any member of the group of drugs used to achieve analgesia — relief from pain.
Good Quotes:
  • First Line: There's a photo on my wall of a woman I've never met, its left corner torn and patched together with tape.
  • Last Line: She paused and nodded again. "I think I'd like that"
Table of Contents:
  • Prologue: The Woman in the Photograph 1
  • Deborah's Voice 9
  • Pt. 1 Life
    • 1 The Exam ... 1951 13
    • 2 Clover ... 1920-1942 18
    • 3 Diagnosis and Treatment ... 1951 27
    • 4 The Birth of HeLa ... 1951 34
    • 5 "Blackness Be Spreadin All Inside" ... 1951 42
    • 6 "Lady's on the Phone" ... 1999 49
    • 7 The Death and Life of Cell Culture ... 1951 56
    • 8 "A Miserable Specimen" ... 1951 63
    • 9 Turner Station ... 1999 67
    • 10 The Other Side of the Tracks ... 1999 77
    • 11 "The Devil of Pain Itself" ... 1951 83
  • Pt. 2 Death
  • Pt. 3 Immortality
  • Where They Are Now311
  • Afterword 315
  • Acknowledgments 329
  • Notes 338
  • Index 359

References:
  • Publisher's Web Site for Book
    Book Groups guide to book
  • Author's Web Site
    Author's Articles
  • Wikipedia-Author
  • Wikipedia-Book
  • Amazon-Author
    Amazon-Book
  • Barnes and Noble-Book
  • GoodReads-Book
  • GoodReads-Author
  • Twitter-Author
  • New York Times March 23, 2013 opinion piece by Rebecca Skloot titled:  The Immortal Life of Henrietta Lacks, the Sequel
  • NPR interview on Fresh Aire with Rebecca Skloot on February 2, 2010.
  • NPR Author's interviews list
  • Smithsonian Interview with Rebecca Skloot on Januaray 22, 2010
  • The Daily Beast - How I Write Interview
  • Jodi Miller's blog on why Skloot is the worst part of the story
  • University of Maryland Henrietta Lacks site
  • Open Notebook-science journalist guidance page. They have copies of Rebecca Skloot's notebooks, plus many interesting articles on writing scientific articles.
  • Sir Lord Keenan Kester Cofield - bogus lawyer
    • University of Maryland site
    • Baltimore Sun article
    • 'Electric Law Library frivolous suit site
    • Justia site on Cofield's suit's
  • BBC article on a statute of Henrietta Lacks replacing one of Robert E Lee.
  • APNews-August 1, 2023-Lacks family recieve compensation from Thermo-Fisher

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