S4L Book Club – The Immortal Life of Henrietta Lacks

Chapter 13 describes how Henrietta’s cells spread from Dr. Gey’s lab to the global science community, how Henrietta’s cells were used in the world’s first cell production factory, and how HeLa allowed others to make a fortune from the sale and transport of her cells “to any scientist interested…”  Henrietta’s cells began the multibillion-dollar industry of selling human biological materials.

  1. Compare the experiments on and distribution of Henrietta’s cells done by the Tuskegee Institute with the Tuskegee syphilis studies (p. 50), both conducted by the same Institute at the same time.  What are the similarities and differences between the two projects?
  2. Do you think that the good brought by research carried out using Henrietta’s cells outweighs the ethical offenses of Dr. Gey and his laboratory?

    Categories: Reading

    10 replies »

    1. I have not answered it yet, so it is ok to have a new go on this one… or I can use the first posting-if you delete it? I am just very much too late on my reading, sorry…

    2. Huh. Maybe Chrissie changed the question. This is new to me.

      Weren’t the syphilis studies done on actual people while the HeLa studies were done on cells? If I’m recalling the right study, that’s a pretty big difference.

      I have an issue with the summary that leads up to the questions.

      “HeLa allowed others to make a fortune.”

      I’d like to know where this fortune actually is. I’m sure some researchers and businesses are making money because of HeLa cells, but is it really a fortune? The researchers I know scrounge for funds to do their research. There are research projects waiting in the wings, not being done, because funding isn’t available. At the same time, pharmaceutical companies are generally thought of as cash cows. Some drugs are ridiculously expensive.

      At the time HeLa was making a splash, I would guess the average income of researchers was higher than the income of members of the Lacks family, but George Gey seemed to live modestly, putting his own money into his research. He wasn’t making a fortune.

      Today, there’s money in the field of medical research, to be sure, but where is it, exactly, and when was it acquired? When HeLa first ignited cell research, I don’t think there was a ton of money in the field, was there?

      The second question asks whether the benefits of research outweigh the ethical offenses of Gey and his lab. Were there ethical offenses, and if so, what were they? We still haven’t determined if it’s an ethical offense to use patient tissue for research once it’s been removed from the patient.

      Throughout the book I felt the Lacks’s anger toward George Gey was the result of misunderstanding. I’m not convinced he was unethical.

    3. Chrissie did, indeed, change the questions.

      Question 1- The syphilis studies were done on living people. I don’t find the two studies remotely similar in nature.

      Question 2- I predicted such a question and I am with Jen on this one 100%.
      First on the money issue- I agree that there is no indication and very little likelihood that anyone made “a fortune” off HeLa cells- either through selling or the actual research. The cells themselves were the medium and not the source of any income or renown. Those factors came from the work work of the actual researchers. No one in the Lacks family could have profited from them in any way, or even kept them alive.
      I saw no evidence of unethical behavior on the part of George Gey or people in his lab. He actually seemed very altruistic. I found myself throughout the book wishing that the family could have really understood this.

    4. I believe the biggest/perhaps only offense on the part of George Gey was that he didn’t inform the family. They definitely should have been informed right from the start. I do believe it was unethical not to inform them. Some people have very strong beliefs about how a body is treated. I have a friend who won’t even let people take her picture because she believes it will drain part of her spirit. For all Gey knew, the family might have had a belief that taking her cells would have damned her eternally. While that didn’t happen in this case, it wasn’t his decision to make, in my opinion.

      That said, I do believe he had good intentions, and that he didn’t do the research for personal gain. And I also don’t think he would have deliberately harmed any of his patients to further his studies.

      The similarity of Gey’s studies to the Tuskegee studies lies in the fact that family members were unaware of the testing. Beyond that, I don’t see a similarity unless you factor in the fact that both studies ultimately benefitted mankind.

      In answer to the second part, I do believe his good intentions and the results did outweigh the ethical offenses, but I think it’s good to learn from the situation so the ethical offenses aren’t repeated. People sold the cells. That’s where the profit margin came in. It wasn’t Gey himself trying to be a millionaire, but it’s an indisputable fact that the sellers of the sells profited, and the family should have gotten a percentage of the sales – just as a writer’s family should profit from the sales of a book or a patent-holder should benefit from the sales of an invention.

    5. I just spent an hour writing a very long comment and just lost the whole thing. I haven’t the energy to try to reconstruct it just now. Jen, if I write it as a Word doc and send it to you, could you post it?

    6. Of course, Becca. I wonder if the length prevented it from uploading? I don’t know of any limit to comments, but it wouldn’t surprise to find there is one.

      This goes for everyone: if you have a long comment, try to save it as a .doc before uploading. If I need to post your comment as a blog post, I will.

      mail AT funkandweber DOT com

      Bring ’em!

    7. I’m not convinced it was unethical for George Gey to not inform the Lacks family that he was working with Henrietta’s cells. In fact, I’m inclined to think it was not unethical.

      For starters, Gey didn’t remove the cells from Henrietta; her doctor did. They needed to be tested so he could make a diagnosis. I believe he had permission to remove the cells and perform the necessary tests.

      After the cells were tested, they were essentially garbage. They weren’t going to be put back in Henrietta. Why shouldn’t they be used for research? Ignoring the money issue for now, I can’t see an ethical problem with recycling discarded human tissue as research material.

      Even now, I don’t think tissue samples are considered possessions of the donor unless they are still part of the donor. I really don’t know; I can’t keep those details straight.

      But another reason why I don’t think George Gey acted unethically is because it was the common practice of the day. He was working with discarded material. He was doing what he’d done hundreds of times before that never caused concern. None of the donors of cells that weren’t successful in the lab were informed, and even now, no one is claiming those donors should have been informed.

      There was also some indication that Gey actually did thank someone in the family. It was a brief mention in the book because there is no solid evidence.

      It was only Gey’s success that eventually caused concern.

      I could be mistaken, but I don’t think Gey ever sold HeLa cells; he gave them away for further research, didn’t he?

      Since then, yes, cell cultures have been sold. I tend to think it would be nice for donors to profit as well as scientists, particularly if the donated cells are unique and important in some way. But this comes about after the HeLa case. Should payments for HeLa be retroactive? Maybe. But I don’t think it’s a black-and-white situation—that’s the first phrase that came to mind. I almost opted to not use it. What I mean is, I don’t think there’s an obvious or indisputable right answer.

    8. From Becca, via email:

      Jen covered some of my points in her second post, but I will still make those points. Forgive me if it seems redundant.

      George Gey did not interface with patients and did not take tissue samples from individuals. It was not his responsibility to obtain permission. He accepted samples given to him by physicians at the hospital. Whether or not the physicians had really obtained permission is a bit ify in this case. I think they really believed that the very broad and non-specific release that she signed covered taking the cells which were sent to Gey’s lab. In fact, what they did was legal, which is not the same as ethical. It can be argued that the tissue samples taken before the radiation treatment were not medically necessary and therefore not covered by the release. However, I do not believe that the doctors were involved in anything devious or sinister. These were cells that were going to be killed by the radiation. Because the procedure was legal, because the patient was not harmed by the removal and because potential good could come from it, I don’t believe the physicians were challenged by any ethical concerns. The cells were to be discarded.

      Regarding the possibility of there being religious or cultural taboos regarding the use of removed tissues, I don’t think this is an issue that Gey needed to concern himself with. I worked in hospitals for 20 years and my experience was that people who have deeply felt opinions and needs regarding the disposition of body parts, tissues, hair or whether or not to received blood products are very outspoken and forthcoming about those issues regardless of their level of education. Henrietta is described as a forthright woman, who would have expressed any concerns she had about tissues being removed and would have done so at the time of the initial biopsy.

      Tuskegee studies- Let’s see, discarded cells that can’t grow outside a medium vs living human beings. Informed consent or not- these things cannot be compared. Moreover, in any studies involving an adult, the family does not have to be informed.

      “Henrietta’s cells began the multibillion-dollar industry of selling human biological materials.” HeLa cells were the beginning, but not the multi-billions by themselves. Yes, money was made off of them, but only as the result of the hard work, knowledge and ingenuity of George Gey and other researchers. If the family had the cells- nothing would have happened. They would have died. Other cell strains were eventually developed, but didn’t grow like HeLa did. Guess which strains sold for more? Patent holders, writers and needlework designers receive proceeds for the fruits of their work, not for the fluke of being related to someone. As I understand, patents and copyrights do not extend to family members unless this is specifically negotiated or willed. (Correct me if I’m wrong.) So the question becomes, did/does the family actually have any rights to the cells which were taken while Henrietta was alive and were of absolutely no value in and of themselves? They would have been discarded. Recall that John Moore (I think that was the name) who had cells that were of very specific value and nature, was unable to get a patent for them.

      The next issue that exists for me is the idea of individuals selling biological materials. This opens a big ethical can of worms in terms of who then gets these materials- the highest bidder? Does this lead to precedents in terms of organ donations and recipients? I personally don’t have any deep attachment to any of my discarded tissues and feel that if they might be of use to someone who may develop a means of helping others- Go For It. In terms of current informed consent, I think people should be asked, but must either say yes or no. If individuals are concerned that their tissues will be used for types of research that they don’t support (completely understandable), they should simply decline the use of their tissues and require that they be destroyed after removal. The magnitude of the tracking of what individual samples could or could not be used for would be incredible.

      All of that said, I don’t think the Lacks family was fairly treated in terms of privacy and truly informed consent. While the person drawing blood for DNA testing believed she had explained the purpose, it is clear from what family members reported that they had not understood what they were told. The access that others had to Henrietta’s medical records and the fact that her name was published without any real attempt to obtain the family’s permission is terrible.

      I think that what the family wanted most was information and recognition; things to which they were unequivocally entitled. That is what Rebecca Skloot was able to provide and why she was able to gain the family’s trust. For me, the greatest tragedy in this book is the story of Elsie, the institutionalized daughter. What happened to her and Deborah’s desire to learn more about her had nothing to do with HeLa. But because of HeLa and Rebecca Skloot’s determination to learn the story behind the initials, Deborah was able to get a picture and at least some realization of what her sister experienced. She was able to die with a smile on her face.

    9. Hear, hear!

      “Moreover, in any studies involving an adult, the family does not have to be informed. ”

      I think I’d go so far as to say the family should not be informed. The adult has a right to privacy: it’s up to him/her to communicate with the family. Once the adult patient is dead, certain issues and permissions may need to be sought through the family, but even then I’d think some details might remain private.

      I agree that the invasion of privacy and lack of informed consent were the major problems. I thought Skloot did a wonderful job of demonstrating the extent of misunderstanding and how it came about. The female researcher drawing blood from the family clearly thought the Lacks family understood. There was another doctor who gave Deborah an autographed copy of his book when she expressed interest in understanding what the HeLa cells were doing. He genuinely thought he was helping her, answering her questions, but that’s not at all what Deborah was looking for or needed.

      Shelly’s a nurse. I’d love to hear her thoughts/experience regarding effective communication with patients.