Books, Science

“The fame she so richly deserves” — Rebecca Skloot: The immortal life of Henrietta Lacks


HeLa cells are everywhere: every biomedical research lab has samples and they are in the middle of current disucssions about how “the new cell biology” will look like.

Of course I had heard of them before, but before reading Rebecca Skloot’s book The Immortal Life Of Henrietta Lacks I had never wondered where they came from. For example, I was suprised to learn that they were named after Henrietta Lacks, the woman they originated from:

Henrietta was a black woman born of slavery and share-cropping who fled north for prosperity, only to have her cells used as tools by white scientists without her consent. (…) It was also the story of cells from an uncredited black women becoming one of the most important tools in medicine. (p225)

And what a great story this is!

The immortal life is not the first book on Henrietta Lacks and HeLa, but the previous ones seem to have had a far more technical-scientific focus. In the words of author Michael Gold:

“And to be honest, the family wasn’t really my focus … I just thought they might make some interesting color for the scientific story.” (p241)

Rebecca Skloot did it differently: she interweaves the life stories of the Lacks family members with science history, racial politics and medical ethics. The Lackses are not the color for the scientific story, for Skloot they are the focus point. And they didn’t profit at all from the impact HeLa had on biomedical research:

“If our mother so important to science, why can’t we get health insurance?” (p193)

asks one of Henrietta’s sons and the distance between the lives of the Lacks family and the medical research done on Henrietta’s cells is one of the central topics of the book.

Skloot’s personal focus is exactly the reason why The Immortal Life Of Henrietta Lacks is such a good read. Since it came out in 2010 it has attracted a huge readership for what potentially could have been a mildly interesting book on medical history.

The downside of Skloot’s narrative approach is that the science part can come a bit short: for example, if there was a good explanation of what it means to ‘immortalize’ cells, then I must have missed it until the very end. Which is unfortunate, because it is one of the central concepts of the book.

The focus of the book also means that some of the discussions I found most interesting happened in the Afterword. For example:

Wasn’t it illegal for doctors to take Henrietta’s cells without her knowledge? Don’t doctors have to tell you when they use your cells in research?” (p361)

Good question! Especially because it relates Henrietta’s story to the life of every reader, who potentially could end up in a situation where her/his cells are used in medical research.

The answer is no – not in 1951, and not in 2009, when this book went to press.” (p361)

Wow! Why is that?

“(P)eople often have a strong sense of ownership when it comes to their bodies. Even tiny scraps of them. (…) But a feeling of ownership doesn’t hold up in court.” (p363)

This is a serious problem, in particular when you hear the thoughts of David Korn, vice provost for research at Harvard University:

“I think people are morally obligated to allow their bits and pieces to be used to advance knowledge to help others. Since everybody benefits, everybody can accept the small risks of having their tissue scraps used in research.”

Speak for yourself, Harvard-boy! Personally, I sure want to have a say in what the folks in white coats do to ‘bits and pieces’ of my body.

This discussion about medical ethics, patient consent and genetic privacy is playing out right now. Henrietta’s story made me feel much more aware for these issues – I think that’s the greatest contribution of this book. I will make sure to recommend it to all my friends and collegues.

Florian

Image source: http://smashingpicture.com/wp-content/uploads/2010/12/nk11.jpg http://blogs.markschuler.com/abrigo/F1.jpg

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