Book Club: Henrietta Lacks

I have requested every single form of Henrietta Lacks that my library offers. That includes the paperback, hardback, audio, and e-book versions, and after several weeks I still don’t have the book in hand. So I’m extending the date for when I plan to finish the book until the end of March. We’ll vote on an April book club choice in a few weeks, and if it’s a popular one like Henrietta Lacks I suggest we all get our booties in gear and request it ASAP! Lesson learned.

This is the discussion thread for The Immortal Life of Henrietta Lacks. Comment below to join the conversation, no need to “sign up” as part of the book club to do so. If you comment on this post, you are part of the club!

The Immortal Life of Henrietta Lacks is a story about science and so much more. Lacks died unaware that doctors would be using her cells to further advances in the scientific community and cashing in on such developments and never received a dime. In search of justice, Skloot seeks out Lacks s descendants to learn if they re aware of the famed cells and to see if they ve derived any benefit from the important contribution to science their relative made. A fascinating discussion of the enduring legal and ethical questions that human-tissue research raises, Skloot s debut is a gem.

I heard about this book on a Radio Lab podcast in May of last year. If you aren’t sure that the book sounds interested to you, listen to the podcast and I think you’ll change your mind!

Book movement has an excellent page on the book with pictures and discussion questions. The NCI-Frederick Scientific Library has some questions, as does this LitLovers page.

19 thoughts on “Book Club: Henrietta Lacks

  1. I’ll be interested to see what the book club’s take is on HeLa. I read it when it first came out, along with most of the science-blogging community, and we discussed it at length as scientists. I’m looking forward to seeing what non-scientists think of the book. I suspect we will have very different opinions on it!

  2. Hmm, I really want to read this but if you can’t get it I doubt I’ll be able to. Maybe the Borders that’s closing down the street from us with have one on super-sale soon. (Really sad about that by the way, 5 Borders are closing here!)

  3. hi, i just discovered your blog and really like it. my husband has this book and has been trying to get me to read it.. i had never heard of it prior to him buying it. seeing your post, now i think i am going to read it…

  4. This is such a coincidence! I just finished reading this book and just RSVPed to an open event with the author in April. I’m in Los Angeles but it looks like there’s an event coming your way in May!

    Jenna Reply:

    I’m going to try to go! Thanks so much for giving me the heads-up about this. Hopefully I can have it read by then!

  5. Just checked if it was “lendable” through Amazon since I own it on my Kindle, and I know you own an iPad. Unfortunately, it’s not, or I would have sent it your way.

    Jenna Reply:

    That would have been AWESOME.

  6. My local library had several copies last month, not sure if they still do. I need to check this out quickly. Good luck finding it!

  7. Amazing story and rather bittersweet perhaps. Lots of info. Yes, have the book!! Call me if u want to read .

  8. I started reading this before you chose it, Jenna, so I am delighted with the coincidence and looking forward to discussing it with others!

    I finished the book today, and really enjoyed it. I normally don’t read much non-fiction, so this was a change for me, and science was always my least favorite subject in school… still, though, it was so interesting to learn about HeLa, something I had never heard of before, and captivating to read about Henrietta’s life, death, and especially her family. It is truly amazing how much times have changed in 60 years, yet eye-opening to learn just how controversial of an issue patient consent for tissue use still is. It is not something I ever would have thought about had I not read this book. I won’t say anything else for now since you and others are still reading, but I look forward to more discussion here!

  9. I just started listening this weekend and I LOVE it so far. Also love audio books so I can paint/run/sew/whatever while “reading”. The readers on the audio version for this book are fab.

  10. Synthesizing my thoughts on this book has been really difficult for me for several reasons.

    First the issue of patients rights/compensation is so complicated. Some incredibly brilliant people are working to puzzle this out and they can’t agree on an answer. It does feel wrong that the family has done so poorly in the wake of the priceless contribution their mother made. But how much would be enough to give them? 1 million dollars? 2 million? What if they spend it all irresponsibly and the next generation does just as poorly in life (poor dental/medical care, little education, etc), but the companies using HeLa cells continue making billions of dollars. Should they be caring for the family as long as the HeLa cells are used?

    Personally I am grateful for medical research. It helps us all be healthier, live longer (and live better as we live longer) and if it became a minefield of patient rights and payouts, what if it all slowed down? Maybe *I* would be better off if I made a few hundred thousand dollars from fancy cells (assuming I had them), but what if the price I demanded made my cells unappealing and they weren’t used (and if they had been used they would have cured cancer or something??!?!!)

    This kind of non-fiction is my favorite though. It reads like fiction and makes me feel like a more intelligent and informed about the world around me. I think that’s one reason why I love the RadioLab podcast so much, because I feel like science can be really inaccessible for the mildly-intelligent person like myself who barely scraped by with a passing grade in her freshman biology class if presented in the right way. If you haven’t read the book I highly recommend it!

  11. I like your synthesis, Jenna! I definitely agree that these issues are incredibly complex, and that makes it all the more impressive that the author was able to write the book in such a way that it reads like fiction, as you point out.

    The compensation issue was the most interesting question the book raised for me. After reading it, I was actually angry about what happened to the family (to the extent that I even went and sent them a paypal donation, even though I think that for the reasons Jenna raised, donating to the foundation that was set up would probably have been wiser). After thinking about the issue a little more, I think the problem is not so much that Henrietta’s family not making a profit off of the cells as that the companies who are making a profit off of the cells are doing so.

    Henrietta’s story is tragic, but she did get free treatment of her cancer, and to that extent, I’m not sure that the subsequent use of her cells in itself was unfair (barring the fact that this should have been disclosed to her). If I were in her situation, I would gladly sign away the rights to my cultures in exchange for free treatment, and I especially would have no qualms about it if this was done through a non-profit organization. I think what happened with Dr. Gey’s involvement with the cells was mostly along those lines in outcome, and having policies that encouraged such agreements (free care through research organizations and clinics in return for tissues that may be useful for science) seems like it would be good for society. Also, without the research that Dr. Gey was doing, Henrietta would never have known that her cells were special, so I think there are problems with arguing that her family is entitled to the profits from her cells. The disclosure issues still stand, but it is hard to believe that Henrietta would have refused to sign such a form, which is the relevant issue for public policy moving forward.

    It’s been a while since I read the book, but I can’t think of any social reason for why the corporations that ultimately sold HeLa cells ought to make such a profit off of it. While they did facilitate a great deal of research, I can imagine a better system where the research institutions still owned the cell line in terms of Intellectual Property, and partnered with another (possibly for profit company) to help distribute HeLa cells. In this case, most of the profits would go back to scientific research (and perhaps into the founding of more clinics like the one Henriette attended). I think the mis-allocation of resources to these companies is especially stark when we compare it to the Lacks family, who also represent the importance of free medical care for those who need it.

    One other issue the book raised for me was that of the extent to which patients trust doctors too much and don’t adequately question enough what doctors do. I think this was especially raised in the description of what happened to Elsie, but also in the instance of the researchers outright lying to the Lacks family when getting blood samples from them after Henrietta’s death. While I think a lot of the consent and privacy issues described in the book have been addressed, I think the need for patients to have a healthy skepticism of the medical practice in general (and looking for confirmation from other sources) is still very much present.

    Jenna Reply:

    Thanks for your response Maria!

    I really like the idea of setting things up so that profits go back into scientific research somehow. That way we all benefit! Then giving my cells about be like a philanthropic donation :)

    I also felt like this book made me want to ask more questions and better understand what I’m signing and being told at the doctor’s office. As one of the doctors demonstrated, it’s not even that they are always out to “get you” it’s that sometimes the thing they are doing seems SO basic, that they forget that the rest of us don’t understand.

  12. I recently finished The Immortal Life of Henrietta Lacks and really enjoyed it. The author was so skillful in how she weaved the scientific information together with the family’s story.

    I was frequently surprised while reading this book. It’s remarkable how much science has progressed in the last 60 years and unfathomable to me that there was no informed consent law when Henrietta Lacks’ cells were taken. Prior to reading this book, I hadn’t given much thought to the legal and ethical concerns regarding the profits derived from medical research based on an individual’s contribution of cells or other biological material. I can appreciate the tension between the need for medical research and advancement, but also an individual’s right to control their own body. I don’t know that I walked away with any answers but the book certainly made me think about an issue I previously hadn’t considered. I’d much rather have a book provoke my thought instead of trying to force “the answer” upon me and I think this book did just that.

  13. I loved this book! Unexpectedly riveting. I think that the author’s major conclusion wasn’t an answer to exactly what rights people should have in their cells or other body “waste”, but that whatever course is chosen is ethical only if people’s humanity is taken into account, that people are treated with respect and dignity. The compensation aspect is secondary in the book to the exploitation and dehumanization.

    Another big thing I liked about the book was the way it challenged me to think about other perspectives of this kind of issue. For example, the cells seem completely impersonal to me – pretty detached from the human they came from – but not so to many in the Lacks family (especially Deborah) who feel like the cell is or carries the spirit of Henrietta.

    phruphru Reply:

    Coming into this thread really late but yes, I heartily agree with your second paragraph. I started crying during the scene when Deborah holds the test tube of cells and marvels that a part of her mother was in there. I’m getting kind of teary just typing this. It was such a powerful scene for me.

  14. Although I’m quite late to the table, I finally got a copy, and wanted to thank you for recommending this book. It was a fascinating story that read as easily as fiction – loved that. I heartily support the scholarship fund for the Lacks family. The story shows how important a good education would have been to Henrietta and her children, and how much pain was caused by fear and misunderstanding. It was so interesting that the family members felt that Henrietta continued to live through these cells and was directing events.

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