The rudiments of the story are simple: a black woman got cervical cancer, her cancer was biopsied and, as part of a larger project, cultured. Tissue culturing was a relatively immature technique at the time, but her cells were easy to culture and easy to grow. As a result, her cells, HeLa, became the basis (literally) for an enormous amount of scientific and medical research. Because of some basic genetic changes (a tumor suppression gene got turned off, and her telomeres regrow), she has acquired a form of immortality.
While many of the participants (notably, Howard Jones) are very recognizable, Henrietta Lacks' story was not well known. At various points, researchers did go back and collect more samples from her immediate family, in an effort to better identify HeLa cells in the wake of a major contamination scandal. A lot of people made money off of HeLa cells, one way or another.
Skloot got curious about Henrietta Lacks and decided to go find out the whole story. I _love_ non-fiction where the author includes herself in the story, and the process (including all the odd circumstances and dead-ends) of finding the story. For a host of reasons, the Lacks family was in no hurry to talk to any more white people showing up wanting to know about Henrietta. But Skloot persisted, and eventually came to an agreement with Henrietta's daughter Deborah. Deborah wanted the _whole_ story told: including all the bad, and including all of Henrietta's children.
The result is amazing, enlightening and often horrifying (particularly the description of what happened to Elsie and others in the institution in Crownsville). Everyone in the family, and Skloot, struggle with the effort to understand what happened, and why, and find a way to make peace with it all. Deborah's insistence on telling the whole story (especially Elsie's story) and Rebecca's consistent decision to stick to neutral description and reproduce language as exactly as possible have resulted in something unlike anything I have ever read before.
And I read a lot of non-fiction.
The science (insofar as I can tell) is accurate. The structure of the book is very accessible. Skloot alternates between developing the medico-scientific story and the biographical/genealogical story, with her research process and relationship with Deborah providing a spine to hold it all upright. Done poorly, this all would have been distracting and confusing, but in Skloot's capable hands, the science provides a break from the often heartbreaking misery and the Lacks family provides a breather from what might otherwise be a monotonous tale of science drudgery interrupted frequently by scandal and occasionally by real breakthroughs (it's really just one instance of synecdoche after another).
Skloot has apparently followed through on her commitment to funnel some of the proceeds to scholarships for the younger generation. If you'd like to help out, you can do so here:
But more than anything else, I LOVED that Skloot could tell this whole story, including the preachers in the family, and the ideas the family had about Henrietta's immortality. Skloot never failed to be respectful of the story and the participants in that story, whether still upright and breathing, or long since dead and buried.
Really, the only sad part of any of this is the prospect of having to wait another 10 years for a book by Skloot. Hopefully, the next book will arrive sooner. I feel relatively confident that the Lacks family will survive this storm of well-meaning publicity; they are truly a resilient people.
Finally, I would like to say thank you, to Henrietta Lacks. Thank you for being a part of developing FISH.
Christoph Lengauer plays a part in _The Immortal Life of Henrietta Lacks_; I am pleased that he seems a sensible human being. I am particularly grateful to Henrietta Lacks, to Christoph Lengauer, and everyone else who played a part in developing the technique and employing it, day in and day out. When I was pregnant with A., it dramatically shortened the time it took to get an answer from amniocentesis. Truly, a nothing in any larger context, but not something I will ever forget.
Perhaps this book will be the leading edge of a world in which we commonly learn about the who and the when and the why, as we learn about medicine and science -- not just the what and how.