Last week, I braved a nasty sleety Cambridge evening to see Rebecca Skloot read from her excellent new book, The Immortal Life of Henrietta Lacks. I'm thrilled to tell you it's finally being released on Amazon tomorrow, so if you haven't already been to your local bookstore, go snag a copy (or enter to win one from Sb, through 2/23/10!)
In case you don't know the story, Henrietta Lacks was a young African-American mother who was stricken with a particularly invasive form of cervical cancer back in the early 1950s. She died within months, but her cancer cells remain alive today - millions of them, in labs all over the world, where HeLa cells are the workhorses of medical research (Henrietta's cells were used to test the polio vaccine, and have indirectly saved millions of lives). For years, though, Henrietta's impoverished, scientifically uneducated family had no idea why scientists kept coming to them and taking tissue samples, nor what had really happened to Henrietta. Because no one explained the scientific meaning of the word "cell" to him, her husband at first had the horrible impression that his dead wife was still alive somewhere, imprisoned in a lab. For much of her own life, Henrietta's daughter assumed she'd also die young, of the same mysterious cancer that killed her mother. Rebecca's account of the family's confusion, pain and fear is truly heartbreaking, because it was so unnecessary: it was one big failure of scientific communication, exacerbated by deep socioeconomic and educational divide. Researchers didn't set out to exploit the Lacks - they just never stopped long enough to realize that's exactly what they were doing.
There have been several wonderful reviews of the book on Scienceblogs already, so I don't think I need to add my endorsement. However, I do want to let you know about the Henrietta Lacks Foundation, a non-profit that Rebecca and colleagues are setting up to help provide health care and eduction to this remarkable woman's descendents. If you, like me, have ever used HeLa cells (and if you have a biology degree, that's highly likely), you should be aware that Henrietta's family has remained disadvantaged - unable to afford the health insurance that could pay for the treatments their mother's cells were instrumental in developing. While HeLa cells have done a lot of good for science and medicine, science and medicine have not been so great to the Lacks family. The Henrietta Lacks Foundation is trying to address that inequity.
There were a lot of interesting questions at Rebecca's talk, but inevitably, the one big one came up: why doesn't the family sue? Rebecca had what I think is a thoughtful and mature answer: Henrietta's family are proud of their mother's contribution to medicine; they don't want to destroy that, or make it impossible for researchers to use HeLa cells anymore. Rebecca is sure they would have agreed to share the cells, if they'd only been asked (and had what that meant explained to them). Henrietta's situation was a product of how medicine and research used to be practiced, without much in the way of informed consent or patient releases. That's changing, and the important thing is to maintain the dialogue about how best to promote medical research while also respecting the feelings of patients and family.
I read this book and found it fascinating. What Henrietta Lack's cells did for man kind is unprecidented in history. However the Henrietta Lacks Foundation web site says her cells were harvested without her knowledge with disasterous effects to her family. I believe at the time cell harvesting was routine, whether right or wrong, however I fail to see what disasterous effects it caused her family. In the book I saw only normal effects on the children of being poor, with little education and without a good home life. I think that line may have been put in to hype the book and degrades what the author has done. The book stands on it's own merit and will be fascinating to those who chose to read it from many points of view.
My understanding from what I've heard Rebecca Skloot say is that the family suffered not from the original harvesting of cells, which they didn't even know about, but from miscommunications with researchers over the following decades. The family didn't have a high level of science literacy, and didn't understand why scientists kept coming to them and asking for more tissue, blood, etc. (to do genetic studies on Henrietta's family, which wasn't explained to them). Sadly, the researchers involved left Henrietta's children in a state of medical and spiritual confusion, which you read about in the book. So I think it's more the emotional impact of those later interactions that was tragic for them, and as you note, made worse because of their home situation.
Excellent book. It is heartwrenching to realize what Henrietta's family has gone through, but inspiring to know that HeLa cells have made such important contributions to science. As someone who has gone through genetic testing due to journeying through breast cancer, my hope is that individuals will continue to understand the benefits of donating to science to aid in finding cures for many diseases. Thanks for your dedication in telling the story of Henrietta Lacks and her contribution to science.