The Immortal Life of Henrietta Lacks by Rebecca Skloot - Scientific Ethics and More

This is the story of Henrietta Lacks, her HeLa cells, and her family's struggle to learn about their long dead mother. It's also a detective story, a story of medical conduct, a story of Jim Crow, a story of modern and historical psychology, a story of ethics, and a story of religious faith. It is even a love story. It is all of these things, and Rebecca Skloot has successfully merged them into one of the most fascinating books I've read in many years. 

Until recently few knew about Henrietta Lacks the person, though cell culture researchers have known of the HeLa cell line for many decades. Taken from the cervical cancer that killed Henrietta in 1951, HeLa cells have become immortal, living in test tubes and freezers in the billions even now, more than 60 years after Henrietta's death. Growing like the cancer they derived from, HeLa cells have been used to develop treatments for many diseases, but also have contaminated virtually ever other cell line that has been attempted. This book traces the history of the cells, their benefits, and the ethical questions that arose because of their use without the knowledge of anyone in Henrietta's family.

Throughout the book Skloot examines the ethics behind medical procedures. In the late 1940s and 1950s, and continuing into at least the 1970s, there was little in the way of informed consent. Doctors could take cell and tissue samples from patients for research without informing those patients of their plans. Ironically, once someone died doctors had to get permission from family members for autopsies and tissue collection. That permission, however, was often given without any real understanding of what was actually happening. The book presents these ethical issues in the context of the times and the overall story of Henrietta's family. She doesn't judge, just presents. But readers with scientific backgrounds and careers would do well to think about the ramifications of those ethical discussions...and ensure they comply with current standards.

But even more than the medical story, this is a book about the struggle of Henrietta's descendants to learn about the mother they never knew. A poor African-American family that has gone through many personal trials must now take on the added trials of seeking out answers in a world they don't understand or trust. At times breathtakingly sad, the story can at other times have you cheering for Henrietta's youngest daughter Deborah and her extended family.

I highly recommend this book. Scientists will find the medical story captivating, both for the thrill of its discoveries and the questions raised about informed consent. Non-scientists should also be enthralled with the medical story, but will also see the broader questions of segregation, poverty, family, religious belief, and the sometimes expansive divide between scientists and the public.

Skloot's writing is stellar. She easily conveys the medical and technical material in language everyone can understand. She is equally adept in communicating the depth of emotion and confusion and anger of Henrietta's family.

[The Dake Page periodically reviews books relevant to science and communication. Feel free to check out past reviews.]