“The Immortal Life of Henrietta Lacks” is not merely one story, but rather several. It’s a biography of the all-too-brief life of Mrs. Lacks, a woman who died of cancer in her early 30s in 1951. It’s also the story of the amazing breakthroughs made because her cancer cells, taken without her knowledge or consent, lived on in laboratories when no other human cells at the time would. Beyond that, it’s a tale of a family surviving great loss and then suffering when they finally learned the truth about their mother and grandmother’s cells. It’s also the story of a woman who wanted to know more about the people behind the HeLa cell line, someone who did not give up despite initial and ongoing resistance from the family. It’s a multi-faceted narrative set against a backdrop of institutional and implicit racism.
Henrietta Lacks was born in Virginia in 1920 (and with the name Loretta Pleasant, no one knows when or why her given name changed), her mother passed away when Henrietta was just four. Raised by grandparents on a tobacco farm, she married her cousin David when she was still very young. She had five children, and after the fifth was born she was diagnosed with cervical cancer. She was treated at Johns Hopkins, which at the time was the only hospital in the region that would accept black patients. During her treatment a part of her tumor was removed and sent to a lab. There the cells simply didn’t stop dividing. Whereas other human cells, cancerous and normal, would die after a short period of time, nothing seemed to stop Henrietta’s cancer cells. They divided and continued, and Dr. George Gey (pronounced “guy”) grew quantities of the cells and provided them to other researchers throughout the world, free of charge. Unfortunately, Henrietta did not recover, passing away on October 4, 1951, at the age of 31.
The cell line, now called “HeLa,” continued and thrived. The cells were used in developing a polio vaccine, and have been used through the decades in researching cancer, AIDS, gene mapping, the impact of radiation and toxic substances. Researchers have grown over 20 tons of her cells. It was fascinating to read about just how vigorous these cells are. In the 1960s and 70s it was discovered that the cells can even become airborne on dust in labs and “contaminate” other cell cultures. Some researchers have advocated for considering the cells a new species, separate from both humanity in general and Mrs. Lacks in particular, because they have continued on their own and present changes over time due to adaptation. Others say this is not warranted, as genetically the cells are still those of Henrietta.
The family did not know anything at all about the medical advances being made through use of Henrietta’s cells. Life for them was a struggle, and oftentimes they lacked the medical care they needed. This raised a very valid point, in my opinion, raised by Henrietta’s daughter Deborah:
“If our mother [is] so important to science, why can’t we get health insurance?"
Good question. Why not? Pretty much everyone who has ever received medical care in recent decades has benefited in some way by research derived from the HeLa cell line, and companies that mass-produce the cells for sale to laboratories have made quite a bit of money. There are also over 11,000 patents associated with the HeLa line, and companies are most definitely profiting from the sale of pharmaceuticals created using research from these cells. The Lacks family has not actually demanded financial compensation, but why not provide Henrietta’s descendants with free, unlimited health care into perpetuity? It seems the least the medical establishment/industry and society in general could do. And yet:
”[Henrietta’s son] Sonny had a quintuple bypass in 2003, when he was fifty-six years old—the last thing he remembered before falling unconscious under the anesthesia was a doctor standing over him saying his mother’s cells were one of the most important things that had ever happened to medicine. Sonny woke up more than $125,000 in debt because he didn’t have health insurance to cover the surgery.“
The writer of this book is Rebecca Skloot, a white woman who comes from a very different social and economic background from the Lacks family. Yet through persistence, patience, kindness and seemingly genuine goodwill, Rebecca managed to win the family’s trust. Her tolerance for Deborah’s crazy behavior (including irratically being friendly and then calling to say she could never speak to Rebecca again, as well as insisting they drive in separate cars because Deborah couldn’t fully trust Rebecca) went far beyond anything I believe I could manage.
From a religious viewpoint, which did come into the picture from time to time, everyone involved in this story seems a little ill-informed. At one point Gary, one of Deborah’s cousins, explains to Rebecca his beliefs regarding Henrietta’s immortal cells. Among other passages, he has Rebecca read John 11:25-26, presented here in the New International Version:
"Jesus said to her, ‘I am the resurrection and the life. The one who believes in me will live, even though they die; and whoever lives by believing in me will never die. Do you believe this?’”
Rebecca then makes this observation in her book:
“In that moment, reading those passages, I understood completely how some of the Lackses could believe, without doubt, that Henrietta had been chosen by the Lord to become an immortal being. If you believe the Bible is the literal truth, the immortality of Henrietta’s cells makes perfect sense. Of course they were growing and surviving decades after her death, of course they floated through the air, and of course they’d led to cures for diseases and been launched into space. Angels are like that. The Bible tells us so.”
This, to me, is all complete nonsense. If one accepts the Bible’s testimony about life, death and the future hope, cell lines aren’t involved any more than a disembodied existence adrift in the heavens. The Bible talks about bodily resurrection (including the long dead) and New Heavens/New Earth. It isn’t surprising that this would all be a bit muddled in this book about Henrietta and her cells, as the older generation of Lacks family had a limited education (although the younger generations are college-bound) that diminished in some ways their ability to grapple with fundamental scientific concepts as well as basic Christian theology. This book’s writer, Rebecca, certainly has the educational and professional qualifications to address the issues of science, but by her own admission had never prayed nor read the Bible until she came in contact with the Lacks family.
Finally, this book raises important questions about tissue samples and research. As Rebecca writes, “When I tell people the story of Henrietta Lacks and her cells, their first question is usually Wasn’t it illegal for doctors to take Henrietta’s cells without her knowledge? Don’t doctors have to tell you when they use your cells in research? The answer is no—not in 1951, and not in 2009, when this book went to press.” Until I read this book I’d always assumed that blood samples, biopsies and other tissues removed from patients were eventually discarded. Apparently this is not the case, and in fact it is routine to send samples off for storage and further research, although now they are fully anonymous with a numeric code.
There are serious ethical and legal questions that remain. If people are allowed to give full or partial consent for their tissues to be used in research, how will that be tracked? Someone could allow their tissues to be used, for example, in cancer research but not in AIDS testing. That could be difficult to keep up with.
As for the Lacks family, they have reached an agreement with the National Institutes of Health that will allow them, via two family members who are part of a panel, to review research to be done with HeLa cells and how results will be published. They will still receive no financial benefit from products made from these cells, but at least they will now have a say in how their matriarch’s biological heritage is used.
“The Immortal Life of Henrietta Lacks” is a grim but hopeful account of Henrietta Lacks and her cells, and it’s a story that needs to be known by everyone.
Eternal Life (New York Times)
Henrietta Lacks family, National Institutes of Health come to privacy agreement (The Christian Science Monitor)
The Henrietta Lacks Foundation
Rebecca Skloot’s page
The Lacks Family page