With all the clamor over sequencing the HeLa genome, Rebecca Skloot and her book ‘The immortal life of Henrietta Lacks‘ are making headlines again. I had been very impressed when I read it first (as you can see from my review in early 2012), but I am less enthusiastic now that I had some time to think about it.
The reason is the way Skloot fails to distance herself (and thus the reader) from the Lackses magical world-view.
Angels versus telomerase
Her treatment of telomerase is a good example. The title ‘The immortal life of Henriette Lacks‘ refers to the immortalization of cancer cells, a genetic change that is one of the hallmarks of cancer. While in normal cells each cell division reduces the ends of chromosomes (the telomeres) and thus limits the life span of a cell, in cancer cells this effect is removed by activating the enzyme telomerase, which repairs the telomeres and allows cells to divide indefinitely.
Telomeres are mentioned twice in Skloot’s book. On page 248 telomerase’s function of telomere repair is explained in two paragraphs.
But after that they are over-shadowed by all-consuming magical thinking.
No escape from the magical world of the Lackses
In chapter 36 “Heavenly bodies” a member of the Lacks family, Gary, reads from the Bible and explains:
“Henrietta was chosen,” Gary whispered. “And when the Lord chooses an angel to do his work, you never know what they going to come back looking like.”
For Skloot this meeting is a revelation:
In that moment (…) I understood completely how some of the Lackses could believe, without doubt, that Henrietta had been chosen by the Lord to become an immortal being.
If you believe the Bible is the literal truth, the immortality of Henrietta’s cells makes perfect sense. Of course they were growing and surviving decades after her death, of course they floated through the air, and of course they’d let to cures for diseases and had been launched into space. Angels are like that. The Bible tells us so.
And this magical world of angels starts to interfere with the real world. Look out for the telomeres, here’s the second time they are mentioned in the book:
For Deborah and her family – and surely many others in the world – that answer was so much more concrete than the explanation offered by science: that the immortality of Henrietta’s cells had something to do with her telomeres and how HPV interacted with her DNA.
The idea that God chose Henrietta as an angel who would be reborn as immortal cells made a lot more sense to them than the explanation Deborah had read years earlier in Victor McKusick’s genetics book, with its clinical talk of HeLa’s “atypical histology” and “unusually malignant behavior.”
It also explains, I would add, why the Lacks family has such a strong sense of ownership of the HeLa genome. Who wouldn’t want to own an angel?
Skloot does little to distance herself from this view. Only when Gary says “Pretty soon you’re gonna find yourself converted” she answers “I doubt it.” That’s all.
And what is mentioning telomeres twice (and explaining telomerase only once) against this magical world of angels? Small wonder I couldn’t remember having seen them mentioned in the book at all, as I had claimed (twice) until a commentator pointed me to the book’s index.
Back to reality
Skloot’s non-judgemental approach and total immersion into the world of the Lacks family have made this book possible. An arrogant approach of “Ok, let me tell you poor misguided folks how it really works” would have been a complete train wreck; I understand that.
Skloot’s sympathy for the Lackses’ world-view, and her empathy and compassion make this book readable and the topic accessible to a wide audience. Skloot’s narrative is powerful, emotional and sometimes heart-breaking. What could have been a dry tome on medical history is suddenly a best-seller. This is a remarkable achievement and she deserves credit for it.
But as the example above shows, Skloot fails to provide enough context and distancing herself (and thus the reader) from the Lackses magical thinking.
And her “surely many others in the world” includes even more people than the Lackses into this magical world without correcting and debunking it. At least for the readers of her book she should have made sure that telomerase makes more sense than angels.
Skloot’s failure in large parts of the book to balance the magical views of the Lackses with the real world makes discussions about HeLa cells and their genomes even more difficult than they already are.
In the magical world, where HeLa cells are Henrietta, the question of consent suddenly seems much easier than in the real world, where the same cells are a divergent cancer cell line from a long dead patient with 60 years of accumulated evolutionary genomic changes in the dish.
Genetic privacy is important. But the HeLa cell genome is the wrong case study for discussing genetic privacy and consent today. Even the powerful emotional rhetoric of Skloot’s book can’t change that.