#90: The Immortal Life of Henrietta Lacks

The Immortal Life of Henrietta Lacks, by Rebecca Skloot

(New York: Crown Publishers, 2010)

Summary:
"Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells -- taken without her knowledge -- became one of the most important tools in medicine. The first 'immortal' human cells grown in culture, they are still alive today, though she has been dead for more than sixty years. If you could pile all HeLa cells ever grown onto a scale, they'd weigh more than 50 million metric tons -- as much as a hundred Empire State Buildings. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb's effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping, and have been bought and sold by the billions.

"Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave.

"Now Rebecca Skloot takes us on an extraordinary journey, from the 'colored' ward of Johns Hopkins Hospital in the 1950s to stark white laboratories with freezers full of HeLa cells, from Henrietta's small, dying hometown of Clover, Virginia -- a land of wooden slave quarters, faith healings, and voodoo -- to East Baltimore today, where her children and grandchildren live and struggle with the legacy of her cells.

"Henrietta's family did not learn of her 'immortality' until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family -- past and present -- is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of.

"Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family -- especially Henrietta's daughter Deborah, who was devastated to learn about her mother's cells. Deborah was consumed with questions: Had scientists cloned her mother? Had they killed her to harvest her cells? And if her mother was so important to medicine, why couldn't her children afford health insurance?

"Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences."

Table of Contents:
Part One: Life
1. The Exam ... 1951
2. Clover ... 1920-1942
3. Diagnosis and Treatment ... 1951
4. The Birth of HeLa ... 1951
5. 'Blackness Be Spreadin All Inside' ... 1951
6. 'Lady's on the Phone' ... 1999
7. The Death and Life of Cell Culture ... 1951
8. 'A Miserable Specimen' ... 1951
9. Turner Station ... 1999
10. The Other Side of the Tracks ... 1999
11. 'The Devil of Pain Itself' ... 1951

Part Two: Death
12. The Storm ... 1951
13. The HeLa Factory ... 1951-1953
14. Helen Lane ... 1953-1954
15. 'Too Young to Remember' ... 1951-1965
16. 'Spending Eternity in the Same Place' ... 1999
17. Illegal, Immoral, and Deplorable ... 1954-1966
18. 'Strangest Hybrid' ... 1960-1966
19. 'The Most Critical Time on This Earth Is Now' ... 1966-1973
20. The HeLa Bomb ... 1966
21. Night Doctors ... 2000
22. 'The Fame She So Richly Deserves' ... 1970-1973

Part Three: Immortality
23. 'It's Alive' ... 1973-1974
24. 'Least They Can Do' ... 1975
25. 'Who Told You You Could Sell My Spleen?' ... 1976-1988
26. Breach of Privacy ... 1980-1985
27. The Secret of Immortality ... 1984-1995
28. After London ... 1996-1999
29. A Village of Henriettas ... 2000
30. Zakariyya ... 2000
31. Hela, Goddess of Death ... 2000-2001
32. 'All That's My Mother' ... 2001
33. The Hospital for the Negro Insane ... 2001
34. The Medical Records ... 2001
35. Soul Cleansing ... 2001
36. Heavenly Bodies ... 2001
37. 'Nothing to Be Scared About' ... 2001
38. The Long Road to Clover ... 2009

My Take:
Well worth waiting for. Just enough scientific detail about the history of cell culture and experimentation, with all its missteps and exciting developments, to provide context, but this is primarily a story about Henrietta Lacks herself, her family, and the racist, classist wrongs often done to poor, uneducated people of color in the name of science before we arrived at our current principles of medical ethics. Fascinating if often sad and infuriating read.