The Henrietta Lacks Foundation: Medicine Paying Something Back

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.

Donate to the Henrietta Lacks Foundation here. Get the book here.