This is a fantastic book. I know, I’m late to the game on this one, and I’m not sure why it took me so long to get to it. The premise bummed me out, a little.
The Immortal Life of Henrietta Lacks is three stories. First, it’s the life story of Henrietta Lacks, a woman who died of cancer at age 31 and whose cells were cultured for use in tissue research. Next, it’s the story of what happened to those cells, whose remarkable ability to survive and multiply made them invaluable to researchers around the world. And third, it’s the story of what happened when Rebecca Skloot contacted Henrietta’s family to interview them for this book, and meets Deborah, Henrietta’s daughter (among other family members).
Deborah is a wholly unique character with a tragic life story who’s worth getting to know. She is completely devoted to finding out more about her mother, making sure Henrietta’s contributions to science are recognized, and learning everything she can about the research that involves her mother’s cells. Deborah hoards every scrap of information about her mother that she can, an impulse to collect and treasure that any of us who have lost someone will understand. Deborah is strange, unpredictable, and mean at times, but her obsession with her mother and her mother’s legacy was completely understandable.
In addition to Deborah’s story, I loved reading about the implications that Henrietta’s cells (called Hela by researchers) had for tissue research and informed consent. It’s jawdropping, some of the research projects mentioned in the book that took place before informed consent was a thing, and incredibly disturbing. I work in public health and conduct research as part of my job, but I think the information in this book on the genesis of informed consent and when it does and doesn’t apply is something everyone should know for their benefit. If you haven’t read this book, you should.