The play coming to Live Theatre next week is based on a true story, which I feel rather ashamed not to have known about before now.
You’d struggle to find someone alive in the world today whose life hasn’t been affected by Henrietta Lacks. And if you - like me - haven’t heard her name until now, then you might want to make yourself comfortable and prepare to feel pretty frustrated on behalf of her and her family.
At the age of just 31, mother-of-five Henrietta died in West Virginia in 1951 after being diagnosed with cervical cancer following the birth of her youngest child. But in the weeks before her death, her cancer cells - taken without her knowledge - were already forming the foundations of some of the most important discoveries in medical history, having produced the first immortal cell line.
More than 60 years after she died, HeLa cells - named after Henrietta, not that anyone told her family for many years - are still dividing and being used in laboratories the world over... and even in space.
According to a heavily-researched hypothesis, more than 50 million metric tonnes of HeLa cells have been created over the years. I don’t know about you, but that conjures the kind of mental picture which should be filed under ‘mindblower’.
They have been used in medical breakthrough after medical breakthrough, from the development of cancer therapies and the polio vaccine to the advancement of IVF and cloning, but it wasn’t until 2010 that her story first came to any kind of public light proper in Rebecca Skloot’s best-selling book, The Immortal Life of Henrietta Lacks, which not only detailed the discovery of the HeLa cell and explored the associated ethical issues, but also offered a moving biography of Henrietta and her children.
Her daughter Deborah was just two when her mother died and knew nothing of her momentous legacy until scientists began asking her for blood samples when she was 23. Deborah is one of the main characters in the new play, How To Be Immortal, which will be performed at Live Theatre on Friday and Saturday next week.
Former Family Affairs and Eastenders actress Clare Perkins portrays her, as well as Loretta - a modern-day scientist preparing to speak at a conference.
The piece also follows the story of couple Rosa and Mick, who are expecting a baby while dealing with Mick’s terminal cancer diagnosis.
Finally we meet Dr George Gey and his wife Margaret who are about to make a mind-bending discovery, thanks to a young mother-of-five called Henrietta Lacks.
“It’s about what we’re left with, how we deal with death and grief... and whether we are ever really gone,” says Clare. “It is complicated, but not too complicated.”
Although the play used Skloot’s book as its jumping off point, Clare says they had to boil it down and focus on a particular element to her story.
“The story we tell is more about the Deborah strand, which is about her trying to find out who her mother was, and about the cells. She had very few memories of her mother - she had one red shoe that had belonged to her - and had no idea about the use of her cells.
“Then there is the story of Rosa and Mick. Rosa finds herself being asked whether doctors can take samples from Mick for research, which is where it is linked to Henrietta’s story.”
Clare, who stars alongside Anna Helena Mclean and John Mckeever in Mira Dovreni’s play, says she had been aware of Henrietta before getting involved with the production, which has been produced by Penny Dreadful, a theatre company which has a reputation for telling extraordinary true stories of people that history has forgotten.
“A couple of years ago, someone sent me a link to her story. I thought it was just amazing - unbelievable really,” says Clare.
“I passed it on to my mum who already knew all about her because my aunt, who works in a laboratory, had told her. Mum had read the book, so when I knew I was doing this, of course I did too.”
As well as shaping to the way the true stories would be told on stage, Clare says rehearsals and the ensuing post-show discussions during the play’s first three weeks on the road have sparked a number of discussions about the ethical issues the story brings to the surface.
“In terms of the question as to whether Henrietta or her family should have been told that the sample had been taken, it’s difficult to say because we don’t know if anyone was asked for permission,” she says.
“Obviously they had tried to grow cells before they grew Henrietta’s and we don’t know if any of the people whose tissue or tumours or cells were taken, were told about them being taken, or told if they ended up being useful.
“It was the ’50s so it was a very different medical time. You just went to the doctors and didn’t question what they said. You just did as you were told.”
When it comes to the question of whether Henrietta’s family should have been made aware of what their late wife and mother had left to the world, Clare believes the medical profession treated the family unfairly.
“It was such a momentous discovery. For example I found out that the test my daughter had to confirm a diagnosis of Williams Syndrome was made possible by HeLa cells,” she says.
“I think it’s fair to say they (the doctors and researchers) were a bit lacking because they didn’t tell her or the family about it. Henrietta was still alive when the cells started to grow and for the scientific community, this was amazing.
“How could no-one have thought to tell the family? I don’t know what you call that... bad ethics? Bad business? It’s certainly bad manners. And for them not to receive anything from the millions which was and is generated on the back of the research which was only made possible because of Henrietta - it’s pretty awful.
“In the book Deborah says that their mum’s cells were so famous and being used all over the world by the medical community, and yet they struggled to pay their medical bills. That doesn’t seem fair, does it?”
Senior biomedical research scientist Dr Steven Laval, from Newcastle University’s Institute of Genetics at the Centre for Life, agrees.
“Clearly this was disgraceful behaviour which would not be tolerated today,” he says. “The issues around consent are deep and wide, and any such activity is now tightly regulated by local and national rules and ethics committees.
“These rules clearly delineate what is and what is not acceptable and the degree of reciprocal commitment from the researchers to the patient and the family (such as feeding back results). In my view the estate of Ms Lacks should have been compensated given the prominence of this cell line in so much research. This would seem to be the minimum that the scientific community owes them, but sadly, this was not the case,”
Dr Pauline McCormack, a research associate from the Policy, Ethics and Life Sciences Research Centre at Newcastle University, says it’s important to consider the context when looking at ethical considerations.
“It’s really difficult to assess a historical situation from our contemporary viewpoint. There were lots of considerations around race, gender, position in society and the hierarchical nature of the medical profession that would be unacceptable today, but which were normal practice when Henrietta Lacks’ sample was taken and used.
“It’s worth remembering that Lacks was treated at a black-only clinic and in a segregated ward of John Hopkins University Hospital.
“In addition, the doctors’ actions at the time were legal and are arguably legal today,” she adds, citing a common paragraph in general anaesthetic consent forms which gives permission to use removed tissue for research purposes.
“The cell line was established from cancerous tissue which was essentially seen as ‘waste’ and there are still differences between countries as to whether consent is needed to store and use ‘waste’ tissue.”
Asked to describe the significance of the HeLa immortal cell line in terms of the medical advances it has contributed to, Dr Laval says: “There is no single discovery that HeLa is unique in providing. However, our understanding of how cells behave, divide, grow, use energy, eliminate waste, inter-communicate, grow old and eventually die has been built on experiments using HeLa cells.
“This explosion of knowledge has informed basic research and drug development, underpinning the development of numerous therapies, notably in the cancer field.
“As an analogy, if science is a tower, then HeLa provided many of the bricks in the base. Those bricks could have come from elsewhere, but it was HeLa cells that did the work. Without them, would the tower have been built?
“HeLa was the first cell line to be derived in this way,” he continues. “Subsequently, thousands (if not millions) of immortal cell lines have been derived through various means. This was a revolution in the way in which scientists were able to study cells and their biology. The ramifications of the technology cannot be understated.”
How to Be Immortal plays Live Theatre, Newcastle, on February 21 and 22. Call 0191 232 1232 or visit www.live.org.uk for tickets.