The Immortal Life of Henrietta Lacks is a diary of the woman, who is not very well known, but whose tissues were made of the immortal HeLa cells that have led to the discovery of some of the most important medications ever to be created. Henrietta Lacks is the reason that many of us are alive today – yet hardly anyone is aware of her existence.
The book starts out describing Henrietta’s finding of a lump on her cervix that she monitored as it grew extremely fast and went purple in colour, before she visited the doctors.
Henrietta Lacks’ family was not very wealthy, with their employment being on their Tobacco Plantation, yet the people using HeLa cells have developed a multi-million pound industry. The book is centred around the ethical dilemmas in medicine surrounding race, freedom of information and rules surrounding ownership of human materials. These issues led to the complete denial of the Lacks family to speak to people about Henrietta’s life as they believed that people were once again trying to make money out of them, whilst they ‘got no money’ out of the HeLa industry meaning that they could not afford their own medical care or education. Therefore this book is very special as Skloot put in effort and lots of time to build up a relationship with the Lacks family in order to find out the story of Henrietta Lacks and educate them on the importance of HeLa cells.
Henrietta was not given enough information about the condition she had, nor the treatment she was given leading to a complete breakdown in relationship and trust between the Lacks family and medical professionals. The racial divide at the time of Henrietta Lacks’ life was very prominent so black people were seen as inferior to white people, worsening Henrietta’s quality of care. It disgusted me that Henrietta was unaware of the infertility caused by having a hysterectomy – with the doctor’s notes stating that ‘she would not have gone through with the treatment’ had she been fully informed about the treatment’s side effects. This is completely wrong and inhumane, and would be considered a complete failure in the NHS system today as now everyone has the right to be informed about treatment options, and has the right to deny any treatment that they do not wish to have. The Lacks family felt that ‘white doctors experimented on her because she was black’ and that John Hopkins ‘killed’ her. Henrietta Lacks died of metastatic cervical cancer on 4th October 1951.
The Immortal Life of Henrietta Lacks also explores the horror and outrage of the population as a consequence of the introduction of genetic engineering. People imagined ‘two-headed toads’ and that ’70 percent of babies would be grown in culture’. This horror is sometimes still expressed today with the fear of ‘designer babies’ being one example that is often talked about in the press. Furthermore, Skloot talks about the introduction of mass production of cells using culture mediums and Henrietta Lacks’ immortal cells. This new industry allowed more black people, particularly women, to be involved in scientific projects.
A huge problem faced when HeLa cells became commercially used was the question of whether to reveal who the woman was behind the cells. Hence, she became known as HeLa. People were interested to know who’s cells were helping to make all of the new scientific discoveries. However, revealing her name would have been breaching patient confidentiality laws. The family later stated that they would have preferred to have her name known so that they could have lived a more comfortable life and would have been made aware far sooner of the medical advances that were made as a consequence of Henrietta’s cells. Henrietta Lane and Henrietta Larson were names guessed to be the name of the owner of HeLa cells, but Henrietta Lacks was ‘never’ guessed.
A further ethical question is whether it was right to test potential transmission of cancer on Ohio prison inmates, who we would now consider too vulnerable to give consent to trials. It is very sad to hear that the inmates were not told that cancerous cells were being injected into them, breaching many current day human rights laws – although this, interestingly, did not breach the Hippocratic Oath. Stories of white people kidnapping black people for medical research led to the development of the Ku Klux Klan.
In addition, whether medical professionals should be allowed to map deceased people’s genomes is an ethical question. Scientists mapped Henrietta Lacks’ genome, using blood tests (described as ‘cancer tests’ to the family) of her relatives to study their DNA.
Henrietta’s daughter, Deborah, became very proud of her mum by the end of the book as Skloot educated her on the importance of HeLa cells and how they have helped a huge number of people due to their assistance in hundreds of scientific discoveries including chemotherapy, gene mapping and the polio vaccine.