However, Henrietta and her family were never aware these cells had been taken from her and then passed around the world. It took decades before articles about HeLa cells even got her name correct (they used Helen Lane and others) that it came as quite a shock to her children and husband (again, decades later) that her cells were still alive. This raised major issue because here was a poor family with many health problems among them and there seemed to be unfairness that while their mother's cells were helping science and making money, they couldn't afford health care.
Author Rebecca Skloot was a ambitious and determined 20-something (and white) woman when she decided to write this book. It took her a long time to just get permission from the family to talk to them. They had been through the ringer and stepped on enough by people with other motivations - they weren't willing to talk to another reporter. She endured hang ups. Abandoned meetings. Complete ignoring. Once they decided to let her in, they let her in very, very slowly and it took several more years to get all the information about Henrietta and her family and her cells that Skloot would need to write this book.
The book follows Skloot on her journey to write the book, while also alternating between chapters of Henrietta's history, Lacks family history and the science behind the HeLa cells. I thought the layout was well done. I liked learning about Skloot's struggles and fears. She also wrote about the science portion in a very digestible manner. Cell division and its experiments are not easy to understand, but she made it easy. And while they were hard to get to know at first, you grow a fondness for the Lacks family, particularly Henrietta's daughter Deborah. She was Skloot's main ally - though she had many fears and doubts and even some paranoia (how Skloot kept up her patience, I'll never know). Deborah was so young when her mother died, she just wanted to learn more about her.
The book brings up so many ethical issues. There are no laws on the books that say patients have a right to the tissue samples that doctors take (with or without their knowledge), even if those tissue samples go on to make millions. While it seems very unfair that the Lacks family received nothing from Henrietta's cells, if they were to sue, they would most likely come up empty.
Is this fair? I can't really wrap my head around it. One expert Skloot talked to said that it's our moral duty as humans to provide parts of ourselves for research to help the greater good. That makes sense. If the Lacks family were asked way back then about using Henrietta's cells for science and said no, where would we be? Or, if they got permission to stop usage of HeLa cells now, science would take huge steps back. But, then you go back to the fact that they can't afford many, many things you'd want them to be able to afford. Is there a middle ground? Probably not without opening a huge can of worms.
Reading about Skloot's journey, but also Deborah and her family's journey of acceptance for what has happened, is so interesting. They're insanely proud and also pissed at the same time. And I think I would be too. Deborah said, "If you're gonna go into history, you can't do it with a hate attitude. You got to remember, times was different."
Skloot meets another relative of Henrietta's who believes, along with many family members, that Henrietta is alive as an angel - as the cells. She's doing God's work as the cells, helping people all over the world. I loved this sentiment.
The book is well written, easy to follow and wholly entertaining. It's a great and very impressive effort by a first-time author. I highly recommend it. It gets you thinking.