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The woman who changed the world

Society owes a debt to Henrietta Lacks. Modern life benefits from long-term access to a small sample of her cells that contained incredibly unusual DNA.

As Rebecca Skloot reports in her best-selling book, The Immortal Life of Henrietta Lacks, the story that unfolded after Lacks died at the age of 31 is one of injustice, tragedy, bravery, innovation and scientific discovery. The story is so gripping and historic, Oprah bought the book rights to make an HBO film about Lacks.

Lacks died in 1951 but a sample of her cells lived. She was not immortal but her killer cells were. Those cells came from a cancer so vicious it could grow outside her body. They were the first cells in history to do so. Her cells thrived in laboratory culture where all others withered, then expired. A past estimate suggested that taken together all the cells that have grown from that initial biopsy would form a chain they could wrap around the earth many times. These immortal cells have divided so many times their collective weight would weigh exceed 50 million metric tons.

George Gey had been fruitlessly trying for years to get human cells to grow in his laboratory. He was hoping to use cell cultures to cure cancer. With a vial of Lacks’ cells, he fulfilled his quest to establish a laboratory model system for cell biology. In turn, this revolutionized medicine and spawned a multi-billion dollar industry.

Since the breakthrough creation of the HeLa cell line, more than 80,000 research articles and 17,000 patents have been published involving their use. Among so many firsts, it was HeLa cells that were shot into space before humans dared venture beyond Earth. Famously, Jonas Salk’s used these cells to fight polio by discovering a vaccine that protected them from this dreaded virus. Launched in 1954, the polio vaccine cost an estimated $35 billion to develop and apply. Economic analysis now reveals that its use in the US saved $180 billion in medical costs, a six-fold economic return on prophylaxis. More importantly, it eradicated this crippling virus in the US in a single generation taking with it nightmarish fears of lifetime paralysis.

Image: HeLa cells, metophase, telophase, by Doc. RNDr. Josef Reischig, CSc. CC-BY-SA-3.0 via Wikimedia Commons.

The value of HeLa cells to society is as unquestionable as the story of their creation is contentious. A mother of five from Virginia, Lacks was never consulted. Her cells were effectively stolen. She didn’t have a choice whether or not to share. Moreover, strangers reaped the financial rewards. Lacks lived on a plantation where her ancestors had been slaves. Today, her cells live on in petri-dish homes dotted around the globe in every conceivable type of research lab.

The doctor who examined Lacks is on record as saying the tumour looked extremely unusual. It was purple and bled easily on touch. Its consistency was like grape Jello. The cells isolated from a bit of this tissue grew in liquid cultures with record growth rates. They were as unstoppable dividing in glassware filled with chicken extract as in her body; her autopsy revealed internal organs riddled with tumours.

This ‘immortality’ is due to the extreme nature of the mutations that transformed ‘her’ DNA into ‘HeLa DNA’.

In 2013, the genome of HeLa cells was published. Chromosome are misshapen by large insertions and deletions of DNA, duplicated, and full of genes firing off haywire messages. Such mistakes suppress the genes responsible for normal cell death and ignite those for unbridled cell-division. The project confirmed just how drastically her genetic machinery had been transformed, giving further clues to the origins of features of cancerous cells.

But again, permission had not been sought. The flagrant lack of consent ignited uproar. The authors of the study were forced to retract the genome sequence from the public domain. The National Institute of Health stepped in and brokered a deal creating a genomic data policy that involved the Lack family in deciding how her data could be used. Now her genome is also paving the way towards ethical sharing of genetic information.

In her book, Skloot includes a touching account of a fellow researcher saying Gey went to Lacks’ bedside on her deathbed and explained how he’d used her cells. Lacks was apparently pleased according to the story. Uncorroborated by any other witnesses, Skloot leaves readers to draw their personal conclusions.

This triggers thoughts. Imagine for another moment this gentler, fairer, and most positive scenario. What if Lacks had been able to choose to share? How might such an encounter have played out?

Perhaps, Lacks, whom friends called Henny, known as the neighbourhood mother, might have paused when Gey explained the importance of her cells growing in culture to think about other young mothers who might be saved if her cells helped cure cancer.

Or stop for a moment to consider the opposite outcome. What if Lacks had been consulted about gifting her biological legacy to the world and chose to have her cells destroyed. Today there are countless cell lines, but hers has the biggest legacy.

Lacks died before the structure of the double DNA helix was discovered. Still, by ceding her cells to the public, in time, by default she would have unknowingly become the most altruistic ‘genomic sharer’ in history.

Surely, it is only wishful thinking aching to heal a broken past to imagine such a positive exchange took place. Yet, perhaps imagining this hypothetical scenario will inspire individuals with the choice to willingly grant their genomes to consider doing so.

Certainly, we have to thank Lacks for being a pioneer in taking her health into her own hands. She was the kind of brave woman who would self-diagnose her own cancer and get herself to a hospital. After noticing inter-menstral bleeding, she found the tumour on her cervix herself. In her day, cancer was hushed up and only talked about in secret, if at all. She suffered great pain leading up to her early death, but the family talked of unbearable stomach aches.

She received treatment at Johns Hopkins, which Skloot reports was the closest hospital that would treat her. Only 65 years ago, hospitals wouldn’t treat non-whites, and if they did, only in segregated wards. Instead of outrage, Henrietta felt grateful.

We owe her for her dignity, courage and persistence; its consequences changed our world.

Featured image credit: HeLa cells, metophase, prophase, by Doc. RNDr. Josef Reischig, CSc. CC-BY-SA-3.0 via Wikimedia Commons.

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