The little known Lacks legacy

Henrietta Lacks is a name you might not recognise, but probably should. Thanks to Lacks’ cells, scientists have developed a polio vaccine, and done research into AIDS, radiation, toxic substances and gene mapping. They were also the first human cells to be successfully cloned. Lacks was never thanked for her contribution to science, but disturbingly, she was never made aware that any cells had been taken from her body.

Born on 1st August 1920, Henrietta Lacks was an African American woman raised by her grandfather in Virginia. Henrietta had her first child aged 14 with her first cousin, David Lacks, who she later married and had a further four children with.

In 1951, Henrietta went to the John Hopkins hospital (the only local hospital which would treat black patients) with pains she aligned to having a ‘knot inside of her’. During examination, Henrietta’s doctor found a tumour in her cervix, which turned out to be a malignant squamous cell cancer. The cancer was caused by the uncontrolled multiplication of epithelial cells. These types of cells line the outer layer of the skin, the surface of most body cavities, and the lumen organs, such as the gut or vagina. They used a cancer therapy which involves placing a radiation source near the tumour. It was during this treatment that two samples of Henrietta’s cervix were removed without permission, both a healthy and a cancerous sample.

Despite repeated treatment and blood transfusions, Lacks passed away on October 4, 1951, aged 31, due to both an acute kidney injury, a complication of the cancer, and the spreading of the cancer throughout her body.

Henrietta lived on in science due to the immortality of her cancer cells. The immortality allows the cell to be stimulated to continuously divide, and avoid the process known as cellular senescence (when cells continue to function normally, but cease to divide). George Gey named the sample HeLa, after the initial letters of Lacks’ name. The cells quickly became in high demand, and Gey donated them freely to any scientists requesting them. Consequently, Lacks’ cells were produced on a mass scale.

During this entire process however, not one person in the Lacks family was notified of the use of the cells. Henrietta was a poor, unschooled, black woman, whose own views were not once considered. Despite the unbelievable profit made by pharmaceutical companies and scientists using the cells – a single tube of HeLa cells costs around £175 – the Lacks family saw none of this money, even though they so desperately needed it. Henrietta’s second child – Elsie – was committed to the Hospital for the Negro Insane (now known as Crownsville State Hospital) to receive inadequate and outdated treatment; money made from the cell line could have provided Elsie with much more beneficial treatment, meaning that she may have survived into her 20s, rather than dying so prematurely at 16.

There was no uproar, not even when the background to the world’s most famous cell line became public knowledge, while the law allowing doctors to use patient’s cells/tissues without their permission was never changed.

Whilst there is the principle of ‘Informed Consent’ in medical research in our day and age, there is no clear law regarding the ownership of human tissue/cell specimens, and who controls their fate.  As a result, whilst the chances of deception on such a large scale are limited now, there is a chance that similar experiments could be carried out without the patient’s knowledge.

Rebecca Skloot is one of many people shocked by this story, and took it upon herself to raise awareness by publishing the book, The Immortal Life of Henrietta Lacks. The key conclusion Skloot draws is that “tissue is so often dehumanised – it’s referred to in medical reports and documents, and no one ever seems to remember that for every single biological sample that’s used in any laboratory, anywhere, there’s a person.”

Henrietta Lacks was a wife, a mother and the key to many incredible medical discoveries. Neither she nor her family have benefitted in any way. It’s hoped that as this story continues to spread – with a film version of The Immortal Life of Henrietta Lacks in the pipeline – the Lacks family will get the recognition they deserve.


Hilary Robinson

Feature Image: Wusa

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