In 1951, Henrietta Lacks died from an aggressive form of cervical cancer. Before she passed away, doctors obtained cell tissue from her tumor. These cells became the first human cells grown in culture, and proved to be “immortal”: growing and dividing, providing essential material for scientific research that has furthered the development of modern medicine, including groundbreaking achievements like the polio vaccine. There was just one thing: the cells were taken without Henrietta’s knowledge or consent. By today’s medical ethics and privacy standards, this sounds outrageous. But at the time, such activity was commonplace.
Author Rebecca Skloot first learned about Henrietta’s cells, known as HeLa, in a high school biology class, and thus began more than a decade of research to learn everything she could about the woman whose cells still exist today in laboratories all around the world. Skloot explains the process of cell division and cell culture, how the cells were used in research, and some of the accomplishments enabled by HeLa cells. This was all fascinating material in its own right.
But even more interesting is the human story behind the science. Henrietta was a poor African-American woman who grew up in Virginia and moved to Baltimore when her husband found employment in the steel industry. She had several children, including a daughter who was institutionalized and died young, several sons, and another daughter, Deborah, who was about 50 when Skloot began working on her book. Deborah and her brothers had learned about the cells several years earlier, and were outraged. How could scientists make so much money off their mother’s cells, when Henrietta’s children could not even afford their own healthcare? And what business did (mostly white) journalists have, poking around in their family’s affairs?
Slowly and with incredible patience, Skloot gained a bit of Deborah’s trust and pieced together Henrietta’s story. And, it seemed, she also helped the family better understand what happened to their mother, and work through some of their anger and grief. When Henrietta died, doctors were perceived as infallible, not to be questioned. And a black patient would never have considered questioning a white doctor, or even seeking clarification. The family was left to draw their own conclusions. Their emotions were fueled by a basic lack of knowledge: of the facts behind their mother’s condition and treatment, and of the basic scientific concepts.
There were some incredibly moving moments in this story. Deborah’s younger brother had led a life of violence and crime, catalyzed by losing his mother at a young age. But he achieved a degree of inner peace, thanks to the kindness of a young researcher who showed him his mother’s cells for the first time. And Deborah’s story — wow. She was a rock, and yet so fragile. Her pain brought tears to my eyes many times.
This was an absolutely fascinating book, raising challenging and controversial ethical issues while telling a very real story of love and family.