Wednesday, June 30, 2010

"The Immortal Life of Henrietta Lacks" Book Discussion

So I had planned for several weeks to write a really nice review of this book, because as pretty much every reviewer on the internets will tell you, it is a fantastic, unique work of considerable significance. Life has gotten in the way of blogging (again). Long story short: my marriage is good (shocking!), kids are healthy, though our 2.75 year-old DS seems to be stuttering lately (as he says defiant, funny things like "Don't tell me what to do!") and DH and I are mildly concerned about it (but not yet concerned enough to get him evaluated), our almost 9-month old DD just started walking and none of us were at all prepared for the wonderful havoc of a fully mobile baby. And things haven't quite gotten back on track for me work-wise ever since our babysitter quit last month to get married at age 20, and her replacement who we have fallen in love with just told me today that she has another job offer and is confused about what she wants to do... Argh! How does anyone actually work in Podunkville when there is no reliable childcare!!?? But enough whining from me... let's talk about what we all came here for... The true story of the HeLa cells and all of the crazybad fucked up shit that Mrs. Lacks' family has had to go through for years.

No worries if you haven't read it/read all of it. Here's my take on it. Everyone should read it. And if you can't read it, wait until Alan Ball produces an HBO special about it in a few years. But please do learn Henrietta Lacks' story.

There are a few things in this book that are going to stay with me for a long time. Namely, Elsie Lacks' horrible story. I think the author buried the lead/lede with Elsie's story, telling it towards the end of the book, concerning what happened to Henrietta Lacks' eldest child who had mental disabilities, and was institutionalized, tortured, and experimented on in an asylum in Maryland in the 1950s. I'm getting choked up typing this. I actually had a nightmare about the Night Doctors, and am convinced that 'urban legend' sprang from a place of truth.

The other thing that will stay with me is the book's epilogue. It boggles my mind the total helplessness of people who have had & in the future will continue to have parts of their bodies used by others for profit, probably unbeknownst to them. Who's to say some of your tissues aren't being used right now in ways you wouldn't approve of? And yet the law provides you no remedy. There is no guarantee that there will not be future families left in the same sad situation as the Lacks family.

What about this book resonated with you? If you didn't like it, feel free to say why - I won't hate on you.


caramama said...

I am so intrigued by this book! Unfortunately, due to some shitty return policies at both Borders and Barnes and Noble, I was unable to buy the book last month. I'm going to either try the library or simply have to read it later.

Jac said...

I really enjoyed this book. So much so, that I read it too fast and I think I have to read it again. I found the stories of all the family members to be so sad, all the abuse etc. But, the thing that I really took away is how much of this "use" of our body products still goes on today with no real accountability.

Case in point: I had to have an amnio recently. On the consent form it asked for my consent to "hold" unused samples for possible research purposes. Problem? There wasn't a separate consent line. If I signed the consent to the amnio, I was signing consent to the whole thing. I don't think I really would have thought about this before I read the book. I crossed out the line for the research purposes and signed the rest of it, and no one said anything. But I am still really appalled. I understand why medical research is necessary and important, but .... science is no good if we don't remember the people behind the science.

Also, the way that no one ever bothered to really explain to any family members what was really going on was upsetting to me.

Cloud said...

I'm sad to say that this book is still sitting on my nightstand. I've been psyched to read it for ages, but I just can't get the time right now, for a variety of reasons.

So I'll be the wacko who comes back and posts a comment here sometime next year.

In the meantime, you guys might be interested in the discussion of this book on the blog of a sympathetic science blogger:

I had some comments in that thread, even though I hadn't read the book (most of us hadn't- the blog author had an advance copy).

hush said...

@caramama -Shitty return policies blow! I appreciate the comment. ;)

@Jac - Totally! The "use" of our body products without accountability is fucking scary indeed. Your amnio consent form story freaked me out. In my life so far I've had a breast reduction and delivered 2 kids - I seriously wonder where my breast tissue and my 2 placentas have actually ended up.

@Cloud - Thanks for the link to the discussion; I will check that one out. Understand completely about nightstand books. The dust on my nightstand collection is disturbingly thick!

mom2boy said...

I've read about the first chapter and a half. I wasn't crazy about the writing style and I found it odd that it was a book about the medical field exploiting people's dna for profit - did the author not do the same thing with the story itself? I was thinking if I read far enough perhaps I'd find out otherwise but it just seemed off putting at the start. Maybe I need to plow through a few more chapters to see if it starts to engage me.

Melba said...

I am still going to read this book! I'll be here with Cloud posting on this thread sometime in the future...

I did finally finish Emma though. FINALLY. Then I popped off two books I got for my birthday in like 2 weeks. After taking 10 months to read Emma. I think I was just sick of slogging through Austen. Anyway, both the books I read were really good. Shanghai Girls was one, Coventry was the other. Coventry is a very quick read but good. Shanghai Girls is longer, has some violent disturbing scenes, but is really really good. I learned a lot about China and Chinese culture.

Anyway, need to go to the book store, and will buy HeLa and get 'er read.

blue said...

Sorry, hush, but I have to join the "didn't do my homework" club. I am really looking forward to reading this book. Someday.

hush said...

@mom2boy - Yeah, give it a few more chapters. I also wasn't crazy for it at the very outset, but once it got going... wow. The author worked with the family and got their consent for everything - the relationship the author formed with them will be made a lot clearer by the book's end.

@Melba- No rush on the HeLa! Glad you finally finished "Emma" - I start a lot of books I don't always finish right away. For example I just finished a collection of Stephen King short stories "Everything's Eventual" 14 months after I originally started reading them. Kids really get in the way of such pursuits. ;)

@blue- I hate it when the dog eats my homework. ;)

caramama said...

@Melba - "slogging through Austen" Wha?!?! I'm going to pretend I didn't read that! ;-)

mom2boy said...

I've read a few more chapters and the story is becoming more interesting but I'm still not wild about the narrative tone. I'm pretty sure I wouldn't read anything else this author writes.

hush said...

@mom2boy - I hear you about not digging the narrative tone, but I can't see how she could have done it differently given how close she was to the family when all was said and done.