Book summary of The Immortal Life of Henrietta Lacks

The story of medical ethics, scientific progress, racial inequality, and a black woman whose cells transformed modern medicine.

Henrietta was born in Roanoke, Virginia on August 1, 1920. She was a black woman who worked on a tobacco farm and later at Bethlehem Steel in Sparrows Point, Maryland. She and her husband, Day Lacks, had five children.
In 1951, after detecting a lump on her cervix, she underwent intensive radium treatments at the Johns Hopkins ward for colored women, intended to combat her epidermoid carcinoma. Unfortunately, these efforts proved futile. On October 4, 1951, Henrietta Lacks passed away.
Biologist George Gey extracted tissues from her without informing her or getting her family's consent. Gey cultivated the cells using his roller-tube technique, mimicking blood flow. Lacks' aggressive cancer cells grew rapidly, doubling every 24 hours, becoming the first human cells to survive outside the body for an extended period of time. Kubicek, Gey's assistant, distributed the breakthrough “immortal HeLa” cells to researchers worldwide.
Scientists established a cell factory to mass produce Henrietta's cells for polio research. Other than their “immortality”, her cells were also:
1. Economical: testing on HeLa cells was cheaper than testing on animals
2. Sustainable: HeLa cells thrived in a culture medium, ensuring continued growth unlike other cells constrained by surface area
3. Transportable: they can survive long travel distances
Eventually HeLa cells were being used to study many other diseases as well.
HeLa cells were the first cells to be cloned and commercially cultured for profit.
While Henrietta's cells became widely renowned, her and her family's story remained largely overlooked.
Henrietta's family remained oblivious to the extraction of Henrietta's cells and their importance and profitability.
1. “I've tried to imagine how she'd feel knowing that her cells went up in the first space missions to see what would happen to human cells in zero gravity, or that they helped with some of the most important advances in medicine: the polio vaccine, chemotherapy, cloning, gene mapping, in vitro fertilization. I'm pretty sure that she -- like most of us -- would be shocked to hear that there are trillions more of her cells growing in laboratories now than there ever were in her body.”
In 1999, during a conference on the cells at Morehouse Medical School, the author discovered the family's reluctance to discuss Henrietta. They, and many black Americans, have a deep mistrust of the medical industry, stemming from its historical exploitation of minorities.
1. There are many documented instances of unethical medical experiments on black people for medical advancements.
2. The Tuskegee Study, carried out from 1932 to 1972, aimed to observe the progression of untreated syphilis. In this study, researchers did not obtain informed consent from the participants -- 600 black men -- and did not provide treatment, even though it was available.
3. “Black scientists and technicians, many of them women, used cells from a black woman to help save the lives of millions of Americans, most of them white. And they did so on the same campus -- and at the very same time -- that state officials were conducting the infamous Tuskegee syphilis studies.”
4. In the 1800s, white slave owners fabricated stories of the "night doctors" in white sheets kidnapping black people to deter escape attempts. This is the origin for the Ku Klux Klan's white cloaks.
5. Johns Hopkins was located near a poor black community.
The author, a white woman, attempted to reach out to the Lacks family but was stood up, prompting a journey to Clover, Virginia, Henrietta's hometown, to learn more about the family.
Following Henrietta's passing, her family grappled with hardship. To support the household, Day worked two jobs, and their son Lawrence left school to care for his siblings. Deborah, Henrietta's daughter, at ten years old was abused by Henrietta's cousin. Deborah later married an abusive husband at 18. Even though curious about their mother's fate, the children respected their father's wish not to delve into the matter.
Despite the contributions of HeLa cells to numerous scientific breakthroughs, their widespread use posed a significant threat to research endeavors.
In the 1960s, a Sloan-Kettering cancer researcher injected patients with HeLa cells without sufficient explanation or consent. Prompting objections from colleagues and press attention.
Geneticist Stanley Gartler discovered that HeLa cells, because of their ultra-survivability, had contaminated various cell lines, raising concerns about the validity of many extensive studies. This raised the necessity of the ability to identify HeLa's presence, leading scientists to seek Henrietta's family for help.
Doctors obtained blood samples from Henrietta's surviving children, facilitated by Victor McKusick and his colleague Susan Hsu. However, the family did not fully understand the significance of this procedure. Deborah, Henrietta's daughter, now concerned about her own risk of cancer, initiated a dialogue with Johns Hopkins doctors and learned more about the HeLa cells.
When scientists took Henrietta's cells and marketed them, it was legal.
The HeLa case reflects broader concerns about privacy and profits from cells.
1. John Moore, an Alaskan pipeline worker, had his cells marketed without his knowledge or consent by cancer researcher David Golde. Moore sued, and the case reached the California Supreme Court. The Court determined that a patient's discarded samples are not his personal property, and he does not have the rights to the profits from products or research originating from his cells.
2. Ted Slavin, a hemophiliac who produced valuable antibodies for hepatitis B, was informed about the potential commercial value of his cell line and thus profited from his cells.
Many argue patients have a fundamental right to know how their cells will be used, as they could be for controversial applications like abortion or weapon research.
Henrietta's cells' cultivation and commercialization without her or her family's consent, coupled with her family's financial struggles, highlighted enduring power imbalances between black and white communities in the U.S.
1. “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?”
The author and Deborah became close friends. Deborah faced health issues and continued to struggle financially. In 2009, Deborah died in her sleep.

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