In 1951 a 31-year-old woman named Henrietta Lacks walked into John Hopkins Hospital in Baltimore, USA, complaining of a knot in her womb and abnormal bleeding. On the same day she was diagnosed with cervical cancer, and eight months later she was dead. This is a tragedy that has unfolded many times, but what distinguishes Henrietta Lacks's case is that cells taken from her tumour are still alive today in countless laboratories around the world. These cells have generated an entirely new branch of scientific research, and have played a vital role in the development of new treatments for many medical conditions.

The story of Henrietta's ordinary life that became an extraordinary death has over the years received a number of twists, not least because while her cells have so profoundly benefited the lives of so many, her own family cannot afford medical insurance that would give them access to treatments her cells have helped to develop.

About Henrietta Lacks

Henrietta Lacks was the great-great-granddaughter of slaves and slave holders, born to Eliza and John Pleasant on 1 August, 1920 in Roanoke, Virginia. Her name at birth was Loretta Pleasant, although none of her relatives know when or why she changed her name to Henrietta. Eliza Pleasant died in 1924 giving birth to her tenth child, after which John took the children to live with their mother's relatives. Henrietta was raised by her grandfather at Clover, Virginia and grew up helping to tend the tobacco crops her family had farmed for generations (and some continue to farm today).

In 1941 Henrietta surprised many members of her family by marrying her first cousin, David Lacks. They had been raised as brother and sister on the family farm, but he was already father to her two children by the time of their wedding; Henrietta had her first child when she was 14. David moved to Baltimore looking for a better life for the family and found work at Sparrow Point shipyards. By 1943 Henrietta, their son Lawrence, and Elsie their daughter joined him and set up home at New Pittsburgh Avenue in Turners Station.

Henrietta and David had three more children, David 'Sonny' Jnr, Deborah, and Zakoriyya¹ who was born just four and a half months before Henrietta was diagnosed with cancer.

Although the move to Baltimore was intended to make life more comfortable, circumstances did not always make this so. Henrietta had five children to raise with a philandering husband who may have given her both gonorrhoea and syphilis. Elsie, who was described by the family as 'different' and 'deaf and dumb', was placed in Crownsville State Hospital in Maryland², in 1950. She died there five years later, aged 15.

Henrietta and John Hopkins Hospital

During Henrietta's visit to John Hopkins Hospital on 1 February, 1951, a sample of cells from the cancer tumour was taken for research without her knowledge or consent. On her second visit around eight days later, Dr George Gey took another sample of the cells, and it is these that formed the origin of what were to become known as HeLa cells.

Dr Gey, a medical researcher, had been trying for 20 years to grow human cells outside of the body to use in medical research, but his efforts were unsuccessful. Henrietta's cells however proved to be different. They were highly aggressive and multiplied very quickly, producing a new generation of cells every 24 hours. Dr Gey had finally found the means to study cells outside of the body, thereby establishing a new branch of tissue research that offered huge potential for medical advances. Dr Gey named these cells HeLa cells, taking the first few letters from the name of their donor, Henrietta Lacks.

On 8 August, Henrietta returned to the hospital in excruciating pain and remained there until her death on the segregated ward for 'blacks'. She was buried in the family plot in an unmarked grave at Lackstown³.

Within a few months of Henrietta's death, the creation of HeLa cells went into mass production at the Tuskegee Institute in Alabama, partly spurred on by the need to find a cure for the polio epidemic that had gripped America. The institute produced about three trillion HeLa cells per week and sent them to laboratories around the world.

HeLa Cells in Medical Research

Shortly after Henrietta's death, Dr Gey along with a fellow researcher in Minnesota discovered that HeLa cells are susceptible to polio. In February 1952 Jonas Salk had developed a vaccine for the disease but needed human cells to test and ensure its safety. HeLa cells were a perfect candidate and were able to play a significant part in the development of the vaccine.

Since then HeLa cells have been used in numerous medical research programmes and have proved to be an untold benefit to humanity. HeLa cells have made a contribution in the following areas:

• Due to a laboratory accident involving HeLa cells, in 1953 scientists in Texas were able to see human chromosomes for the first time.
• Using HeLa and mouse cells, two British scientists created the first human-animal hybrid cells in 1965.
• Cell culture techniques based on those developed using HeLa cells led to the birth of Louise Brown in 1978, the first 'test tube' baby.
• In the 1980s HeLa cells were infected with HIV by Richard Axel, which led to major advances in the understanding of the virus.

Perhaps the most poignant area of research HeLa cells were used in was the discovery of a vaccine for what was the cause of Henrietta's death. In the 1980s the German virologist Harold zur Hausen discovered Human Papilloma Virus HPV-18, one of the main causes of cervical cancer, and found that Henrietta had been infected with a particularly virulent strain. Through his work with HeLa cells and others, Hausen won the Nobel Prize for the cervical cancer vaccine he developed.

These areas of medical research represent just a fraction of those that HeLa cells have been part of. Since Henrietta's death there have been more than 50 million tonnes of HeLa cells produced and their use has been acknowledged in more than 60,000 scientific papers, with 10 new ones added each day. HeLa cells are so integral to medical research there is now a thriving billion-dollar medical industry based around them, with over 11,000 patents logged with the US Patent and Trademark Office as a result of their use. With a vial of HeLa cells costing around £175, many people have become very rich, and a lot of careers have been launched due to their invaluable role in medical research.

Henrietta's Family

The story of HeLa cells is one of both scientific and financial success, but for Henrietta's remaining family the story has been very different. Henrietta left behind a young family with very limited financial means and without access to the advantages of education. In 1955 they also lost their sister Elsie who died at the age of 15 at the Crownsville Hospital. They later learned she had been abused there and may have had holes drilled in her head as part of experiments⁴.

The Lacks family story is one of many hardships, but for scientists it was not a story that had a direct relevance to their work with HeLa cells. Because of this, and partly to protect the anonymity of the source of HeLa cells, there was a fundamental absence of communication with family members. For 20 years the family had no idea their mother's cells were still alive in laboratories throughout the USA and beyond. The first time the Lacks family became aware of the existence of HeLa cells was in 1973, when someone who recognised the surname asked if they were related to Henrietta, the cells' donor.

Around the same time, medical researchers asked the Lacks family for blood samples, which they believed were to test for signs of cancer. However, they were not told the samples were to help study the genetic structure of HeLa cells. After obtaining the blood samples the researchers did not contact the family again, so they were left to wonder if they were at risk of suffering the same fate as their mother.

Apart from the lack of communication, at the heart of the way Henrietta's family have been treated is the issue of money. While HeLa cells have brought many medical advances and wealth amongst the medical establishment, none of that wealth has gone to Henrietta's family. In fact the Lacks family cannot afford healthcare, so cannot buy the medicines their mother's cells have helped to develop. As well as financial considerations, there is the contrast between the plight of the Lacks family and the career success of those who worked with HeLa cells, as well as those whose lives have been improved and extended by medical treatments brought about by their use.

Commemorating Henrietta Lacks

The name of Henrietta Lacks is still relatively unknown with little being done to recognise her posthumous contributions to medicine. However, some encouraging steps have been taken. In 1996 the Morehouse School of Medicine in Atlanta, Georgia and the mayor of Atlanta formally recognised Henrietta and her family for their role in the development of HeLa cells. For a while following this, Henrietta's home district of Turners Station commemorated her life on 1 February each year⁵. Soon afterwards the mayor of Baltimore declared 11 October Henrietta Lacks Day.

In 1997 the American Congress passed a resolution (sponsored by Rep Robert Ehrlich, whose second district includes Turner Station), acknowledging Henrietta and HeLa cells' contribution in medical advances.

After 59 years Henrietta's unmarked grave finally received a headstone. On 29 May, 2010 Dr Roland Pattillo of Morehouse School of Medicine donated two headstones, one for Henrietta and one for her daughter, Elsie. The inscription on Henrietta's headstone reads:

Perhaps the most promising acknowledgment for the Lacks family is the publication of a book, 'The Immortal Life of Henrietta Lacks' by Rebecca Skloot, which follows the many strands that form the complex story of Henrietta's life, HeLa cells, and the aftermath of her death for the remaining family members. Ms Skloot has also set up the Henrietta Lacks Foundation so that some of the proceeds from her book can help provide the Lacks family with medical insurance, as well as helping other African Americans who wish to follow a career in science or medicine.

Conclusion

Although there is evidently a discrepancy between the success that HeLa cells have brought for the medical community and the plight of the Lacks family, this is not to suggest they were treated any differently than anyone else in their circumstances. In the 1950s both social and medical ethics were different than they are now, and it was standard practice to take tissue samples for research without the patient's consent.

The plight of the Lacks family may also create the notion of an uncaring medical establishment exploiting HeLa cells with a disregard for the Lacks. But this would be to overlook the efforts medical researchers have undertaken in order to develop better treatments and medicines for innumerable conditions while working with HeLa cells.

However, the story of Henrietta Lacks and her family still lies uncomfortably because it raises many unresolved issues, such as what rights patients have over their own cells, and what responsibilities the medical profession has towards patients if their cells lead to medical breakthroughs and profits. In the case of Henrietta, her daughter Deborah Lacks summed up the issue succinctly when she said:

Truth be told, I cannot get mad at science, because it helps people live, and I'd be a mess without it. But I won't lie. I would like some health insurance so I don't got to pay all that money every month for drugs my mother's cells probably helped make.