Sunday, December 25, 2011

Musings: The Immortal Life of Henrietta Lacks

Immortal Life of Henrietta Lacks
The Immortal Life of Henrietta Lacks is one of the most popular non-fiction books to have come out over the past year or so.  It's about a 30-year-old woman in 1950s Baltimore who had a severe case of cervical cancer.  While being treated at Johns Hopkins Medical Center, the doctors took part of her tumor (totally normal practice at the time).  The cells from that tumor grew and multiplied more quickly than any other cells in culture ever had, and became known as HeLa, a strand used to help cure polio, to determine the effects of outer space on the human body and many other things.  Henrietta Lacks' family, though, only knew about this much after the fact, say that they have been lied to about the whole procedure, and none of them even has healthcare, even while many more corporations and laboratories make money off of Henrietta's cells.

I really enjoyed this book and found the science of it fascinating, but I admit that I didn't love it as much as I thought I would.  The whole story of the cells and the science and ethics and extensions of them was fascinating.  I loved learning about how HeLa has been used to advance science, really enjoyed debating with myself internally about the ethics of doctors using a person's body for science without that patient's consent, and was utterly fascinated by the way the HeLa cells contaminated so many cultures and cost millions of dollars in lost and wasted research, leading to a much more stringent cataloging and sterilization system.  So interesting!

But the science is just half of the book.  The other half is about Henrietta's family and about medical history around African-Americans in general.  These parts of the book made me more uncomfortable.  I think this is a good thing- it's important to step outside your comfort zone and see the world from someone else's perspective.  And being uncomfortable is a learning experience.  For example, my brother has spent a lot of time working with AIDS patients in the US and in India, and my father is a general practice doctor in a pretty poor area of Chicago.  Both have told me multiple times that African-Americans just don't go see doctors regularly, or often enough, or until a condition has gotten so bad that they just can't help it any more.  I never understood this, but my brother would just shrug and say, "They just don't trust doctors very much."  This didn't make sense to me because why would one minority population over any other type of population feel so strongly about something like that?  In reading this book, I realized it's because there were many studies done on African-Americans that were not ethical at all.  This knowledge and fear has been passed down over generations and clearly still exists today- the community as a whole is very wary of doctors, and with good reason.  But it is so, so sad to see the way it is played out in this book.

Henrietta Lacks herself seems to have been a vibrant and interesting woman, but I can't help thinking that if she had lived out several more decades, she would have seen a lot of heartache.  Her children grew up impoverished, abused, angry and uneducated.  I was so stunned reading about their lives, which in no way mirror mine at all.  In the 1990s, Henrietta's daughter Deborah was still using kerosene lamps to light her apartment.  Her son Lawrence did not understand the concept of a cell.  Another son needed triple bypass surgery.  Her youngest ended up in prison for murder.  Another daughter died, alone and forgotten, in an insane asylum.  Most of Henrietta's family thought that by keeping the cells alive, Henrietta was alive.  They thought that Henrietta's cells had cured cancer.  They thought Johns Hopkins had made a ridiculous fortune off their mother's cells.  They were really, really paranoid.

I can't yet wrap my head around everything that was presented in this book.  For much of it, I felt that Henrietta's husband and sons just wanted monetary compensation for their mother's cells, and didn't really care much at all about learning how she had helped advance medical knowledge.  Her daughter, Deborah, seemed much more keen to learn about her mother as a person, but she was also so paranoid about everyone's motives.  So much of this book is a very intimate, disturbing journey into an American family that has never overcome the race barrier.  It just made me sad.

It was a very eye-opening and powerful read, though- not just to learn about the science and politcs behind HeLa and the medical advances achieved using that cell strain, but also to learn about Americans that lead very different lives than mine.

14 comments:

  1. I have to say yours is the most interesting reaction to this book I've read. I have not read the book, but I have read enough reviews of it to have recognized the story when I recently saw it in a vaguely disguised Law and Order episode!

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  2. I agree that there is so much to this book that it takes a while to think about all of it. I was overwhelmed by the poverty and the lifestyle of Henrietta's extended family. And the science was much more interesting than I expected it to be

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  3. This book also really saddened me, from the way that Henrietta and her family survived and ended up, to the way that the cells were used without anyone's permission. It made me a little angry too, and I grew so heartbroken over the impact that these advancements had on the family that supplied the cells. It was a crazy book, and some of it bordered on the fantastical, but it was very, very interesting, and it was one of my favorite reads of the year. So sad though, and I just kept thinking about how much could have been avoided with a little education and some care given by the medical professionals who took Henrietta's cells.

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  4. I actually recommended this one to the one reading friend I have in my workplace and he read it before I've even had a chance. We've discussed some of these issues, and they do make me even more keen to try it, though I'm certain it will also make me uncomfortable (in a good way).

    Thanks for a thoughtful review, Aarti! :)

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  5. I applied to be a book giver for World Book Night and this is the book I want to give away! I think it's very readable non-fiction, and yeah, there's all sorts of stuff in there that makes you think. I, too, was surprised that African-Americans are so distrustful of doctors...but those medical experiments were appalling!

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  6. rhapsody - Oh, that is fun! How did the episode end? With the family or the doctors winning?

    Helen - Yes on both counts. It was very sad on one level, but so fascinating and awesome on the other!

    Zibilee - I think that's actually where I differ from many people. I don't necessarily believe the doctors did something so wrong. I certainly think they should have been more clear in detailing what they were using the family's blood for, but I also get the feeling the family didn't make clear that they were confused, either.

    Andi - If you read it and it makes you uncomfortable the way that it made ME uncomfortable, let me know :-)

    softdrink - Oh, what a cool way to spread the word! And yes, the Tuskegee experiment in particular really chilled me.

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  7. This is one I got for Xmas, so I'm excited to finally read it after hearing so very much about it throughout the blogosphere.

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  8. I read this book quite randomly back when it came out and was surprised by how much I liked it. I learned a lot about things that I was not even expecting the book to cover. It was an experience!

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  9. I read this book last year, and thought that the author had strived to present a balanced view, both of the family and of the science.But yes, you don't feel positive after reading it - and it's an eye-opener. It's one that ought to be on medical students and health professionals' reading lists.

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  10. I agree. There is a lot to think about in this book and a lot to react to. I think it suffers a bit from too high expectations (at least that happened to me), but it's still a very interesting book.

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  11. Not long before I read this book, I had had a conversation with my then boss who is fairly young, well educated, african american man about how he was paranoid about doctors and this book just so exemplified that for me. It was crazy and heartbreaking to read about the family and how little they even understood.

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  12. Very interesting review, Aarti! The personal side of this book does sound every bit as eye-opening as the scientific one, if not more.

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  13. I've been eager to read this book. Your comments on the ethically issues and Ms Lacks paranoid family adds to the intrigue: I wasn't aware how much of the book deals with that too. Thanks for sharing your thoughts.

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  14. Henrietta Lacks story is told with compassion and the kind of honesty that sometimes makes you want to look away. Should be required reading for everyone involved in the science of medicine.

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