HeLa: The historical injustice that shaped modern medicine

By Beth Roberts
Published February 20, 2023

Key Takeaways

  • HeLa cells have been central to modern medical research and are a laboratory staple. They were taken from Henrietta Lacks without her consent during a biopsy when she was being treated for cervical cancer, and have been used in various research.

  • Lacks's story brought to light the ethical injustices that had been perpetrated over the cells' 60 years of use.

  • The situation has raised questions about consent, racial inequality in medicine, and medical privacy. Steps have been taken to give autonomy back to the family where possible.

Medical research spanning everything from influenza drugs to polio vaccines and COVID-19 treatments, to Parkinson’s disease and even the impact of zero gravity on human cells, all share a common thread — HeLa cells.

Since HeLa was isolated as the first immortal cell line in 1951, it has become a laboratory staple. If you piled all the HeLa cells grown over the last 70 years into a heap, it’s estimated they would weigh over 50 million metric tons. Placed end-to-end, they could wrap around the Earth over three times.[]

However, the story of the woman behind the cells eclipses what would otherwise be a triumphant tale.

An immortal legacy

Henrietta Lacks was an African American woman who died from cervical cancer aged 31 in 1951. The HeLa cells, central to modern medicine, were taken from her cervix during a biopsy without consent.[]

In 1951, Dr George Otto Gey, Margaret Gey and Mary Kubicek, researchers at Johns Hopkins, were shocked to observe the properties of the new cell sample. While most cells die after dividing 40-60 times, Lacks’s cells thrived in a Petri dish and doubled every 24 hours without end.[]

This was an incredible discovery, as identical human cells could be used throughout the duration of an experiment, allowing for repeated analysis on a consistent subject — all without having to test on live humans.

Researchers found that the cells were infected with human papillomavirus (HPV) 18. This had attacked proteins p53 and retinoblastoma, which stop cells dividing continuously to prevent growths. The cells had lost the ability to produce these ‘sentinel’ proteins, so kept dividing indefinitely.

HeLa rapidly became a staple of medical research; only 4 years later Jonas Salk used HeLa cells to help develop the polio vaccine.[] In 1976, HeLa cells were essential in gaining insight into how HPV caused cervical cancer, shedding light on their own origin.

Decades later, HeLa cells remain the most commonly used cell line and can be found in biological labs across the world. They grow so prolifically that after other immortal cell lines were discovered many were found to have been colonized by HeLa after accidentally being exposed.

A forgotten figure

But in 1951, when Lacks went to the Johns Hopkins Hospital - the only hospital in the area which would treat African American patients — she had no idea that her cells would be one of the most important scientific discoveries of modern medicine. In fact, she didn’t even know that her cells had been taken for testing.[]

Lacks was a 31-year-old mother of five, working as a tobacco farmer in Baltimore County. She was diagnosed with a malignant epidermoid carcinoma of the cervix (later discovered to be misdiagnosed adenocarcinoma) and died as a result in October 1951.[]

For many years, she was a forgotten figure. Many scientists used HeLa cells not even knowing her full name, and she was often mistakenly called ‘Helen Lane’. In contrast, her family remember her as a vibrant and caring woman. Her granddaughter Jeri Lacks-Whye told Nature: “I want scientists to acknowledge that HeLa cells came from an African American woman who was flesh and blood, who had a family and who had a story.”[]

It wasn’t until the publishing of Rebecca Skloot’s book, The Immortal Life of Henrietta Lacks, in 2010 that Lacks began to be widely considered as an individual beyond the cell line. However, the book also brought to light the ethical injustices that had been perpetrated over the cells’ 60 years of use.

How Henrietta is changing bioethics

In 1951, there was no established practice of obtaining consent from cell donors, nor was it legally required, and it was common practice at Johns Hopkins to pass samples from biopsies onto researchers.[] This meant Lacks’s cells samples were taken, both before and after her death, without informed consent, something that wouldn’t happen today.[] However, this was only the beginning.

For almost 20 years, Lacks’s family was not even aware that her cells were being used.

Later on, in the 1980s, their family medical records were accessed and published without their consent.[] In 2013, the HeLa genome was published online, without the consent of her family, before being removed.[][][]

As Lacks’s story has become more widespread, it has brought up questions of consent, racial inequality in medicine, and medical privacy — with steps being made to give autonomy back to the family when possible. The genome was republished later in 2013 after an agreement between Johns Hopkins, the National Institutes of Health and the Lacks family. This included establishing a committee to decide who can use HeLa cells — which always includes two members of the Lacks family.[]

As a family, they support the use of HeLa cells, seeing the ways that they have advanced cancer research as a particularly poignant tribute to Henrietta. Alfred Lacks Carter said: “They were taken in a bad way, but they are doing good for the world.”[] However, they are still fighting for recognition for Lacks’s contribution to medicine and for ensuring that research follows ethical guidelines in future.

In October 2021, Lacks was honoured with a World Health Organization Director-General’s award in recognition of her contribution to modern medicine.

WHO Director-General Dr Tedros Adhanom Ghebreyesus called it an opportunity to reckon with past scientific injustices and “to recognise women - particularly women of colour — who have made incredible but often unseen contributions to medical science”.[] Lacks’s family members were appointed as WHO Goodwill Ambassadors for Cervical Cancer Elimination in 2022.[][]

While HeLa cells have shaped modern medicine, Henrietta and the Lacks family are likely to continue to shape medical practice and ethics for many years to come.

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