2012 Book 11: The Immortal Life of Henrietta Lacks

Last year I saw The Immortal Life of Henrietta Lacks by Rebecca Skloot while I was at the airport. It looked interesting and I added it to my TBR list.

This was a fascinating, though occasionally boring, look into how one woman's cells reached immortality. It raises many questions regarding the ethics of scientific research and whether or not our cells are our own. It gives a look into how laws have changed since the 1950s and how difficult it would be to know you were being treated unfairly or unethically if you were poor and uneducated – even today.

It was truly fascinating how Rebecca Skloot was able to befriend the Lack's family and over the course of a decade dig into and document who Henrietta Lacks was and how her cells came to exist in research labs all over the planet.

Excerpts from the book:

"We must not see any person as an abstraction. Instead, we must see in every person a universe with its own secrets, with its own treasures, with its own sources of anguish, and with some measure of triumph." — ELIE WIESEL from The Nazi Doctors and the Nuremberg Code

“It sound strange,” he said, “but her cells done lived longer than her memory.”

 

...zeal for research must not be carried to the point where it violates the basic rights and immunities of a human person.

 

“John Hopkin didn’t give us no information about anything. That was the bad part. Not the sad part, but the bad part, cause I don’t know if they didn’t give us information because they was making money out of it, or if they was just wanting to keep us in the dark about it."

 

"It’s not fair! She’s the most important person in the world and her family living in poverty. If our mother so important to science, why can’t we get health insurance?”

 

Henrietta was a black woman born of slavery and sharecropping who fled north for prosperity, only to have her cells used as tools by white scientists without her consent. It was a story of white selling black, of black cultures “contaminating” white ones with a single cell in an era when a person with “one drop” of black blood had only recently gained the legal right to marry a white person. It was also the story of cells from an uncredited black woman becoming one of the most important tools in medicine. This was big news. 

“John Hopkin is a school for learning, and that’s important. But this is my mother. Nobody seem to get that.” 

 

Beyond simply knowing their tissues are being used in research, some tissue-rights activists believe donors should have the right to say, for example, that they don’t want their tissues used for research on nuclear weapons, abortion, racial differences, intelligence, or anything else that might run contrary to their beliefs. They also believe it’s important for donors to be able to control who has access to their tissues, because they worry that information gathered from tissue samples might be used against them. 

It’s illegal to sell human organs and tissues for transplants or medical treatments, but it’s perfectly legal to give them away while charging fees for collecting and processing them.

“Researchers have become entrepreneurs. That’s boomed our economy and created incentives to do research. But it’s also brought problems, like secrecy and arguments over who owns what.” 

“The fundamental problem here isn’t the money; it’s the notion that the people these tissues come from don’t matter.”