Have you ever heard of Henrietta Lacks? You might have heard her name in the news during the past few weeks, when a Tennessee-based parent named Jackie Sims has made it her mission to get Rebecca Skloot’s The Immortal Life of Henrietta Lacks banned in her son’s school system because of content of “pornographic” nature. An outrageous and frankly ridiculous demand, considering what the book actually is about. Which is where I come in!
Earlier this year, on March 8th, my Facebook timeline was filled with lavish praise, pictures of flower bouquets, chocolates and such, but the one post that really caught my eye was IFLScience’s one about Henrietta Lacks, the immortal woman who saved millions of lives.
Intrigued with the description, I found out there’s a book about her story, so I left all other reading aside and started devouring page after page about this poor black woman who died in 1951 in immense pain and leaving five kids behind.
It would seem a straightforward story: a black patient goes to the hospital, her cancerous cells are biopsied and doctors decide to try and grow those cells in an attempt to produce an immortal cell line. There were absolutely no laws regulating tissue management and rights at that time, so Henrietta had no idea that her cells had been preserved, let alone that they were being grown in a lab!
The rest is history: Henrietta’s cells, known as HeLa to the scientific research community, were the only ones that survived and kept on thriving, successfully creating what is now a golden standard of cells used to test all kinds of new vaccines and drugs. They were sent to space, exposed to radiation, blown up, used to test the polio vaccine, bought and especially sold at a very high price by medical companies. They allow researchers to do tests that would be impossible to perform without a human being.
One vial of HeLa can go from 100$ to 10.000$ based on the type of genetic modification the cells have undergone, but Henrietta’s family hasn’t seen a dime of the immense cashflow the cells have generated during the past 60 years. Not one cent, nothing at all. They can’t even afford medical insurance, and the saddest part of all is that they don’t really understand what HeLa actually is.
Ms. Skloot tells the story of the Lacks family with intricate delicacy. The second part of the book, which details her friendship with Henrietta’s daughter Deborah, is also the account of a writer trying to build trust where others have only offered deceit. It gives a feeling of how impossible it is to make things right for the Lackses at this point, after they have been lied to, exploited and abandoned. An utterly unfair outcome caused by a severe lack of regulation that now is steadily being resolved, but which unfortunately will offer no benefit to the Lacks family.
All in all, it is a book worth reading if you want to know more about the story of these incredible cells and the legal consequences they had all over the world in terms of tissue management, patient privacy, use of biopsy tissue for research: to sum it up, what happens to the bits and pieces people leave behind in the doctor’s office. But most of all it is an account of human pain and suffering, and how they have helped ease the pain and suffering of millions across the globe, making Jackie Sims’ request even more ludicrous. I hope the book will continue to be read and studied in schools, and I hope students will ask keep asking questions about HeLa and their incredible story.
Thank you, Henrietta.Buy the book!