Reading The Immortal Life of Henrietta Lacks caused me to reflect on the sanctity of life, or, more specifically, the sanctity of organic material. As many readers will know, cells taken from Henrietta’s cervical cancer in 1951 proved to be ‘immortal’, able to grow and divide easily in culture medium, thus allowing scientists to investigate many aspects of cellular behaviour. The existence of these HeLa cells has led to numerous medical advances and has improved the lot of humankind. Henrietta deteriorated and died the same year, aged 31, and did not know that her cells were being grown in a laboratory by excited scientists.
Her cells were taken without permission, and the book by Rebecca Skloot explores the impact of this on Henrietta’s family over generations. Images of HeLa cells replicating into a huge aggregate mass occur throughout the book.
There’s no way of knowing how many of Henrietta cells are alive today. One scientist estimates that if you could pile all HeLa cells ever grown onto a scale, laid way more than 50 million metric tonnes.
If you could lay all HeLa cells ever grown end to end, they’d wrap around the world at least three times.
More resonant still are the words of her surviving relatives. They are quoted verbatim by Skloot, and in their minds Henrietta continues to live a second, possibly endless, life.
‘Everything about Henrietta dead except them cells’ (Cousin Cootie)
‘Nobody round here never understood how she did and that thing still livin’. That’s where the mystery’s at.’ (Cousin Cootie)
‘It sounds strange,’ he said, ‘but her cells done lived longer than her memory.’ (Cousin Cootie)
‘Her cells have been blowed up in nuclear bombs. From her cells came all these different creations that medical miracles like polio vaccines, some cure for cancer and other things, even AIDS. She liked taking care of people, so it made sense that she did with them cells.’ (Sonny Lacks, middle son)
‘…they just steady growing and growing, steady fighting off whatever they’re fighting off.’ (Lawrence, oldest son)
We see how her surviving relatives have imbued her cells with meaning, with agency, with motive. Their an emotional continuum; the only other time I read words like this in relation to tissue or organs is in the field of organ transplantation. There, we are used to words like ‘gift’, ‘generosity’ and ‘legacy’.
Kloot makes the point that the family’s educational level is likely to have influenced their perception. In a 2010 Smithsonian Magazine interview, she explains that when family members were asked to agree to further sampling (in order to fully map Henrietta’s genetic profile), they did not have a good understanding of what a cell was. To them, the news was received as, “We’ve got your wife. She’s alive in a laboratory. We’ve been doing research on her for the last 25 years. And now we have to test your kids to see if they have cancer.” These are Kloot’s words, and given the close relationship she formed with certain family members we can be confident that she is right.
One of the reasons these quotes made an impact on me is because at one stage in my career I did laboratory research. This involved taking blood samples from over 100 patients with liver disease, spinning down their immune cells and freezing them for later analysis. When I moved on, those test tubes lay in a freezer, untouched. Later, I heard that due to a reorganisation of the laboratory, and given the fact that ‘my cells’ would never be used again, they were disposed of. Simple as that. In the yellow bin.
This made no impact on me emotionally. Yet, I remembered meeting those patients and getting their permission (which included signing several forms in triplicate) to take cells out of their body and use them. At the time these formalities were irksome, but of course they were necessary as I was taking biological material from individuals. The ethical governance around medical research is rigorous, scientists are inspected from time to time, and if any shortcuts have been taken, they are banned from future studies.
Most patients signed the forms without much thought and didn’t care when I drew those blood samples. Some quipped, ‘Well I hope some good comes of it…’ Others were more interested, especially when I mentioned that their genetic material, DNA, might be studied (it wasn’t). This element clearly cut through to their sense of identity, and perhaps triggered thoughts of legacy following their death.
The cells that I used contributed to some academic papers, and these have taken their place as individual, bricks in the ever-advancing staircase of medical knowledge. It is unlikely that my experiments will lead to any meaningful new treatment. Would those patients have been bothered to know their cells were tipped into a bin without ceremony? Probably not.
Cells are one thing – organs are another. The distressing Alder Hey scandal that broke in 1999 saw parents re-grieving for their dead children when it was revealed that hearts, brains and other body parts had been kept back following autopsies without permission. The same principle applies – biological material is sovereign to the individual, and nobody has the right to take it or use it without explicit permission.
Henrietta Lacks lived in a different age, but as Skloot’s book illustrates, there were misgivings and criticisms even then. Other examples of unethical research are given, including the infamous Tuskegee syphilis trial (where black men with the disease were observed over decades for progressive signs and symptoms, rather than given the widely available cure of penicillin). Henrietta’s cells were also used unethically: Dr Chester Southam, injected HeLa cells into the skin of prisoners to see what happened. Observing that they grew tumours, he then,
…removed some of the nodules to verify that they were cancerous, but he left several to see if the patients’ immune systems would reject them or the cancer would spread. Within two weeks some of the nodules had grown to two centimetres – about the size of Henrietta’s tumour when she went in for her radium treatment.
Southam continued to undertake unethical research until he was called out by three colleagues who referred him to a regulator. He was punished with a year’s probation, but nevertheless went on to become president of the national cancer society and a professor at a medical school. Guess they thought his science was sound.
Leaving such egregious behaviour to one side, it is clear that doctors and clinician-scientists can become desensitised to the meaning of the material they keep and use. The pathologist central to the Alder Hey scandal, Professor Dick van Velzen, was heavily criticised, then struck off. Later articles about him suggest that he is unrepentant, blaming the accumulation of around 2000 organs on the doctors who had asked families for permission to do autopsies without explaining the process properly – i.e. that organs could be retained. His personality, his profession, his academic interest, meant that he was unable to reflect – at some point during his long career, as he walked past his many jars – that something might be wrong here.
The lessons from The Immortal Life of Henrietta Lacks should have been learned already. The errors and injustices (to Henrietta and to her family) are now historical, however, reading how her family reacted to the idea that their mother’s tissue continued to thrive long after she died, is enlightening. The rationalist will of course state that these cells are not ‘her’, there is no spiritual value, no real meaning in them, but the human mind does not work this way.
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