Book - The Immortal Life of Henrietta Lacks

The Immortal Life of Henrietta Lacks

by Rebecca Skloot

"Henrietta Lacks, as HeLa, is known to present-day scientists for her cells from cervical cancer. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells were taken without her knowledge and still live decades after her death. Cells descended from her may weigh more than 50M metric tons. 

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 was buried in an unmarked grave.

The journey starts in the “colored” ward of Johns Hopkins Hospital in the 1950s, her small, dying hometown of Clover, Virginia — wooden slave quarters, faith healings, and voodoo. Today [there] are stark white laboratories with freezers full of HeLa cells, East Baltimore children and grandchildren live in obscurity, see no profits, and feel violated. The dark history of experimentation on African Americans helped lead to the birth of bioethics, and legal battles over whether we control the stuff we are made of."

summary & image from goodreads.com

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JHT's comments - When the Henrietta's cells were first used, no one had been able to keep human cells alive long enough to use them in research. Henrietta Lacks’ cells were the first. No one could anticipate how they would be used because using human cells for research just hadn't been possible. Now it was. It was a brand new field full of questions that hadn't been asked much less answered. I think we have similar issues today in a number of areas, one of them concerns all our data that's floating in the ether. We can't anticipate what's going to happen, what will be possible and what will happen with our data, with or without our consent. 

This book has it all – family history, investigative reporting, big ethical issues, intimate personal stories, cultural differences, informed consent and no consent, human rights, love, family, science, right and wrong, ethical and nonethical, looking into the future, ... 

Can we remain anonymous? Should we? What can and can’t researchers do? Is there any responsibility, morally or ethically, to the people who donate, knowingly or unknowingly, to a cause bigger than all of us?

An interesting aspect of this story is the culture and beliefs of Henrietta's surviving family. Some of them thought there was a possibility Henrietta somehow still lived because her cells were out there - alive. They wondered if she was hurting because of what was being done to her cells. 

Author's website

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This intersection of medicine, culture, belief systems, and ethics is also addressed in "The Spirit Catches You and You Fall Down."