on Henrietta Lacks and the extended phenotype
I first heard the story of Henrietta Lacks and her amazing HeLa cells in the mid 90s, while working in a virology lab in Memphis Tennessee. Then, as now, I was struck by the combination of pathos and science fiction. The former comes from the way that the cells arise from a tumour that killed Lacks at an appallingly early age, robbing a family of its wife and mother in the callous way tumours do. Yet the scientific advances to which those cells have contributed have saved unknown thousands of lives. The science fiction comes from the way that the cells, now growing in labs throughout the world, have come to outweigh many times over the body of the woman they killed. They are hardy specimens. Tissue culture weeds capable of over-running less fecund replicators. Given the enormous numbers of copies of their DNA, it is arguable that Henrietta Lacks’ genome together with the mutations which gave rise to the tumour, is the most selectively successful human DNA there has ever been – albeit operating through its extended phenotype of being useful to cell biologists.
And a fat lot of good that did poor Henrietta, whose story is at last told in a new book, titled ‘The Immortal Life of Henrietta Lacks” by Rebecca Skloot, which I am looking forward to reading. From this review in the Guardian it sounds like it redresses some of the balance. It’s true that Lacks herself, unlike her cells, was largely forgotten until recently. The person who first told me about her got her name wrong, reporting it as ‘Helen Lang’, and mistook the primary tumour for the breast (Lacks died of ovarian cancer). And there is something about her case that fits all too well into medical science’s shamefully cavalier attitude to the patients who supply the raw material. While the way in which some journals insist on using the word ‘patient’ rather than ‘case’ can seem irritating and inappropriate at times it should be supported insofar that it can help remind us that a case is a patient, and yet more, a patient is a person.
We should go out of our way to remember the people who have contributed to our research, and who though they have suffered appallingly, have indirectly relieved the suffering of others.
In undergraduate biology, we were taught that ‘Helen Lane” was a pseudonym for “Henrietta Lacks” that was put in circulation to protect the family’s privacy, not as a careless misremembering. But perhaps that’s an urban lab myth – I haven’t read the Skloot book yet.
Interesting. I guess it sort of makes sense. In which case the reasons why the family’s privacy was breached should make for an interesting tale…
I so want to read this book! I asked about it in the bookstore, hoping that it would have been out in the UK yet, but it wasn’t. Bookstore lady could see it in the computer (this was at the Waterstone’s near UCL) and made me tell her what it was about. I always thought bookstore staff just read all the books, but I guess they might just get the synopsis from random people who come in the store =)
Well, this book has already got a huge amount of press and twitter mentions, so the UCL Waterstone’s (being a specialized science branch) has probably had lots of requests. But Henry Gee was reading it weeks ago (and loving it), so are you sure it’s not available in Britain?
Yeah, I first heard it as ‘Helen Lane’ back in the late 80s, I guess, but her real name followed soon after.
I’m sure. Bookstore computer says it will be released in June. She gave me an exact date that they would get it in the store, but I needed instant reading material (train trip, no book in bag, it was an emergency!) so I didn’t listen to that detail, just processing that I couldn’t have the book now. The copies that are around are all review copies or bought in the US store, I guess.
It is a riveting read, deeply emotive and very much a human narrative, interspersed with a good bit of cell bio 101. I very much recommend.
I can’t wait. She’s got loads of amazing press on it so hopefully she’ll makes loads of well-earned cash on the venture!