Henrietta Lacks was an ordinary woman who grew up in rural Virginia, America in the first half of the 20th century, and like many other black Americans at the time, lived a fairly simple life. She sadly died from cervical cancer on 4th October 1951, leaving behind her husband and cousin David ‘Day’ Lacks, and her five children. What happened next changed the history of medicine forever, but no one in her family would find out until much later, in 1975.
I first heard about Henrietta Lacks when discussing some of the ethical issues revolving around diagnosing and treating patients, and decided to read the book ‘The Immortal Life of Henrietta Lacks’ to find out a bit more. Before I began, all I knew of Henrietta was that she was a poor black woman, from whom someone had taken some cells – now known as HeLa cells – which had been used all over the world for all kinds of research, from developing a polio vaccine, to being exposed to nuclear radiation to see how this would affect human cells. Incredibly, Henrietta’s cells have lived and continue to live for far longer outside of her body than they ever did inside her body whilst she was alive, and can now be purchased by almost any who requires them.
As I mentioned before, Henrietta eventually died from cervical cancer, but before she did, a man named George Gey took a sample of cells from her tumour and cultured them, and it was there that the cell line known as HeLa was born. However, neither Henrietta nor any of her family members were aware (and consequently had not given any consent) that this had occurred, or even that she had had cells taken from her at all. Before I read this book, I had struggled to understand why this was such a controversial topic – I couldn’t see what difference the consent of the patient would have ultimately made, given that she died so soon after, and her cells were only being used for research purposes – nothing wrong with that… or is there?
As Skloot makes clear in her book, there are a number of reasons as to why Henrietta’s cells have caused so much controversy; firstly, when Henrietta’s family eventually did find out that their mother’s cells were still very much alive years after her death, it caused them great deal of worry, especially for her daughter Deborah. Having struggled at school as a result of being near-deaf, Deborah understood very little about what the existence of her mother’s cells actually meant – she worried that her mother was still alive and and being researched on to test possible new drugs and vaccines, and that all this time she was being caused pain; consequently becoming very ill as a result – she developed depression and anxiety, and even suffered a stoke as a result of high blood pressure caused from the stress of learning about her mother’s cells. As well as this, Deborah’s brothers Sonny, Lawrence and Zakariyya Lacks were especially annoyed to learn that their mother’s cells had been sold all around the world and had raised billions of dollars, yet they never saw a single penny of it. Whilst they were perhaps not so worried about the cells as Deborah was, they thought it ironic that their mother had contributed so much to medicine yet they were unable to afford basic medical insurance.
Additionally, in the 1980s, several years after it was made publicly known that HeLa cells had come from a woman called Henrietta Lacks, Henrietta’s medical records were released to the public, again without the consent of her family members, completely breaching the idea of patients having a right to medical confidentiality. Much more recently, in March 2013, HeLa cells had their entire DNA genome sequenced and published, which was then withheld by the researchers after objections were raised by the Lacks family.
Aside from the controversy, what this book also highlighted for me is the fact that these cells really did come from a living person, who had a life and a family. I think this is very important to recognise because so often in science it is easy to distance ourselves from the actual human or other organism which we are studying, and perhaps can cause us to act potentially less ethically or morally correct than we ought to – I hope to remember this in years to come when treating patients – that people are so much more than just their illness, and we have to allow for the fact that people have lives, families and beliefs they wish to uphold, and we need to respect these as much as we try to respect the patient.
I can highly recommend ‘The Immortal Life of Henrietta Lacks’ – it is not only very educational and gives you a lot to think about but is also very entertaining and a good read for anyone interested in science.
Thanks for reading!