Perhaps the most thorny and difficult issue within the narrative of Henrietta Lacks is the issue of progress vs. privacy. On one hand, Henrietta Lacks’ story is clearly one of an arrogant medical establishment taking advantage of a poor black woman. This is irrefutable. Yet at the same time, it is undeniable that Henrietta’s cells have created unparalleled progress within the field of cellular biology, leading to innovations that truly may not have happened had scientists not possessed the HeLa cell line. Although the medical establishment clearly took advantage of both Henrietta and her family, the world is undoubtedly better because the cell line exists.
This issue, author Rebecca Skloot explains, has huge implications for the modern world. She traces the timeline of when patients began to use their tissue samples for financial gain, and follows several lawsuits in which people claimed that money made off of pieces of their bodies belonged to them. Even now, she explains, a debate rages about discarded tissues that exist in huge quantities in hospitals around the country. Many scientists and researchers believe that these tissues can and should be used for any experimental purposes that researchers require. Other patients’ rights activists believe that any such use requires informed consent on the part of the patient.
The question gets only more complicated when you consider the complex problem of DNA sequencing. Such an act can tell you intimate details about a person or a family, such as what diseases they will be predisposed to in life. Since the HeLa line is essentially everywhere in modern medicine, it is all too easy for the Lacks family’s privacy to be violated over and over through their DNA. Yet to deny the growing field of DNA research the tools that it needs to continue progressing seems like a terrible course of action. In the end, Skloot doesn’t pose any easy answer to this issue, but mostly just reminds her readers of the validity of both sides of the argument.
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Progress vs. Privacy Quotes in The Immortal Life of Henrietta Lacks
The Lackses challenged everything I thought I knew about faith, science, journalism, and race. Ultimately, this book is the result. It’s not only the story of HeLa cells and Henrietta Lacks, but of Henrietta’s family—particularly Deborah—and their lifelong struggle to make peace with the existence of those cells, and the science that made them possible.
Everything always just about the cells and don’t even worry about her name and was HeLa even a person…You know what I really want? I want to know, what did my mother smell like? For all my life I just don’t know anything, not even little common little things, like what color did she like? Did she like to dance? Did she breastfeed me? Lord, I’d like to know that. But nobody ever say nothing.
Mary’s gaze fell on Henrietta’s feet, and she gasped: Henrietta’s toenails were covered in chipped bright red polish. “When I saw those toenails,” Mary told me later, “I nearly fainted. I thought, Oh jeez, she’s a real person. I started imagining her sitting in her bathroom painting those toenails, and it hit me for the first time that those cells we’d been working with all this time and sending all over the world, they came from a live woman. I’d never thought of it that way.”
No one told Sonny, Deborah, or Joe what had happened to their mother, and they were afraid to ask…As far as the children knew, their mother was there one day, gone the next.
Every human being has an inalienable right to determine what shall be done with his own body. These patients then had a right to know…the contents of the syringe: and if this knowledge was to cause fear and anxiety or make them frightened, they had a right to be fearful and frightened and thus say NO to the experiment.
Can you tell me what my mama’s cells really did?...I know they did something important, but nobody tells us nothing.
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. I think they made money out of it, cause they were selling her cells all over the world and shipping them for dollars.
You know what is a myth?...Everybody always saying Henrietta Lacks donated those cells. She didn’t donate nothing. They took them and didn’t ask.
Only people that can get any good from my mother cells is the people that got money, and whoever sellin them cells—they get rich off our mother and we got nothing…All those damn people didn’t deserve her help as far as I’m concerned.
