Immortality and obscurity
This essay was written by Harriet Groom and was first published in the 2010 Mill Hill Essays.
The Immortal Life of Henrietta Lacks is a non-fiction work about the life and family of a woman from Baltimore in the USA. She died in hospital in a “coloured ward” in 1951 from an aggressive form of cervical cancer and yet cells from her body have continued to grow in laboratories since her death. These cells have been the spring-board to some of the greatest advances in medical science in recent history but their fame in the scientific community has far exceeded that of their begetter, Henrietta Lacks. When George Gey, a scientist at Johns Hopkins University, created an immortal cell line from Henrietta Lacks’ tumour he named it HeLa (hee-luh) from her first name and surname. The HeLa cell line was set to change biomedical science forever but the Lacks family would only find out 20 years later that cells had been taken from Henrietta without her knowledge or permission and were being traded and used across the globe.
This book is simultaneously charming and informative, gripping and thought-provoking. It addresses issues as fundamental as trust, racism and loss, alongside a detailed and transparent commentary on the science that developed from the creation of the first immortal human cell line. Rebecca Skloot has penned an engaging description of the journey she took to research the life, family and issues relating to Henrietta Lacks and her amazing legacy. The people she met on this journey are brought to life with great skill and faithfulness to reality, to the extent that you feel you are accompanying her on her journey of discovery. The book is an essential read for anyone using HeLa cells, but is also highly recommended for everyone else, scientist or not. One of the many reasons for its broad appeal is its resistance to being pigeon-holed into a particular genre. Although it is largely a biographical work, the narrative is simultaneously popular science, a detective story and, with characters so compelling, you could be forgiven for mistaking it for a novel. The book provides an eye-opening insight into medical practices at the time, intertwined with the impact of class, race and mental health.
One woman, many lives
The book begins by introducing us to the title figure but she is by no means the only protagonist. The other main character of the book is Henrietta’s daughter, Deborah. Abused sexually as a child and physically in her first marriage, hers has not been an easy life by any stretch of the imagination. Her feisty but vulnerable character is the main focus of the story and is part of what makes it so engaging. The third unexpected character in the book is Skloot herself. On her website she talks about the decision to include herself in the narrative and it is clear that the difficult and sometimes dangerous routes she took to find answers are indeed part of the story itself.
Beyond the three main characters I really enjoyed the book’s “tale within a tale” nature. Throughout, the reader is introduced to numerous characters, be they members of the Lacks family or their neighbours, or the scientists who contribute to the HeLa side of the story. For each individual Skloot concisely and elegantly gives us an introduction to their lives, character and motivations. By the end of the book I felt like I had spent time with a huge diversity of people including some of the scientists that previously I had only known from textbooks.
Despite its charm and wit, the book is not a comfortable read. The tragedy contained within it is profound, from the blackening of Henrietta’s tumour-ridden body during radiation therapy to her burial in an unmarked grave. Deborah’s quest to learn more about her sister, Elsie, who was committed to a Hospital for the Negro Insane during childhood, is not an uplifting episode. Indeed it is debatable whether the tale as a whole ends happily or not. The book finishes with a brief summary of where its protagonists are now, a touch gratifying to a naturally curious reader. This serves to remind the reader of the biographical nature of the book; a reality check at the end of a novel-style read.
Award-winning writer Rebecca Skloot
Rebecca Skloot was first inspired to find out more about Henrietta Lacks after her community college lecturer, Donald Defler, gave a brief introduction to Henrietta and her cellular legacy.
As the other students filed out of the room, I sat thinking, “That’s it? That’s all we get? There has to be more to the story”. I followed Defler to his office. “Where was she from?” I asked. “Did she know how important her cells were? Did she have any children?” He said “I wish I could tell you, but no one knows anything about her.”
This thirst for knowledge and passion for a story, Henrietta’s story in particular, stayed with Rebecca Skloot for over 20 years, through high school, a biology undergraduate degree, a Master of Fine Arts in creative fiction and on into her career as a science writer. This combination of scientific and creative training has led to a very accomplished first book. The book has received very positive reviews as well as accolades. Rebecca Skloot will be a success story to inspire anyone considering the “soft science” path of scientific journalism.
The project to research and write the book took over a decade to complete and required a significant financial and emotional investment by the author. The effect she had on the family is evident throughout and particularly touching in the closing chapters of the book. The acknowledgments are a revealing treat in this respect, referring to one of the Lacks family members singing hymns into her answerphone on her birthday.
The omnipresent tool
Before I read this book, I was certainly familiar with HeLa cells and, like many other scientists, had used them during my research. However, I am ashamed to say that my knowledge of their origin was limited to a muted recollection of a lecturer referring to the woman from whom they were derived. A brief perusal of the index of my undergraduate science “bible”, the textbook Molecular Biology of the Cell by Alberts et al., satisfyingly reveals an entry for “HeLa, cell line”. The citation refers to the establishment of a continuous line of cells derived from a human cervical carcinoma in 1952 by Gey and colleagues. Unfortunately, in common with many references to the cell line in biology textbooks, the person to whom HeLa refers is missing. Now, thanks to “The immortal Life of Henrietta Lacks”, the identity of the woman from whom this ubiquitous cell line was derived will remain etched in my memory permanently. The next time I use them in the lab my thoughts will migrate to her family and the author of this book.
Immortality and legacy
The unique status of the cells derived from Henrietta’s cervical tumour was that they were the first immortal human cells grown in culture. George Gey’s lab, and many other labs, had tried for years to make human cells grow outside of the body but this was the first successful attempt. In the chapter “The birth of HeLa”, Skloot describes how Henrietta’s cells doubled in number every 24 hours and expanded to fill the space they were given. An oft-quoted statistic is that more than 50 million tonnes of HeLa cells have been grown since their first isolation in 1952. At a conservative estimate they feature in more than 60,000 scientific papers and thousands of registered patents. Scientists affectionately refer to HeLas as weeds due to their ability to out-grow and out-survive other cell lines. Their ease of growth is a double-edged sword as it means that HeLas easily contaminate other cell cultures (an issue that is covered with engaging historical perspective in the chapter “The HeLa Bomb”).
In my PhD I used HeLa cells to study the properties of a particular protein of human immunodeficiency virus (HIV). Like many researchers I chose these cells due to their high growth rate, ease of manipulation and robustness. Since then I have used HeLa cells to study the infectivity of a novel retrovirus, xenotropic murine leukaemia-related virus (XMRV). You would struggle to find a tissue culture lab in the world that has never had HeLa cells growing in it and considering the scale of scientific research across the world, this is no small statement.
So, what makes HeLa cells different from the normal cells in Henrietta’s body? Scientists use the word ‘immortal’ to describe cells that do not adhere to the “Hayflick limit”. This is a natural limit on the number of times a cell can divide before it undergoes programmed cell death. Cells in the body are limited to this number of divisions because the ends of chromosomes shorten with every cell division and the cell commits suicide before it passes on truncated, damaged chromosomes to daughter cells. The portions of DNA at the ends of chromosomes that signal this cell death when shortened are called telomeres. Immortal cells express an enzyme called telomerase which restores the ends of the chromosomes, thereby bypassing this important defence mechanism and allowing mutations to be passed on to future generations of cells. The accumulation of mutations through a number of avenues can lead to the transformation of a cell (see Martin Webb’s 2005 Mill Hill Essay on cancer).
The process of transition from a normal cell to a cancer cell is called transformation. In 1984 Harald zur Hausen discovered a new strain of a sexually transmitted disease-causing virus, human papilloma virus (HPV). To date hundreds of HPVs have been identified but only a small subset of these, known as “high risk” types, cause growths on the cervix that can lead to cancer. Together with collaborators zur Hausen identified HPV- 16 and HPV-18 in cervical cancers and he believed these viruses could cause cancer. He had HeLa cells growing in his lab so he tested these and found them to contain HPV-18. He obtained cells from Henrietta’s original biopsy and found that the cells had multiple copies of the HPV- 18 genome. Some viruses show a propensity to insert some of their own DNA into a cell’s DNA via the process of integration. In HPV this occurs but with a very low frequency. Subsequent research into HPV in HeLa cells found that the insertion of some HPV DNA into the cellular DNA resulted in disruption to the levels of the cell’s p53 protein. The p53 protein regulates the cell cycle and is considered to be an important guardian of the genome from mutations. Through interactions with other proteins p53 prevents the cell dividing when there is something wrong and therefore has a protective effect against cancer. The inactivation of p53 will have contributed to the transformation of the cells in Henrietta’s cervix. The work on HPV-18 and further studies with HeLa cells contributed to the Nobel Prize won by zur Hausen in 2008 for his development of a vaccine for cervical cancer, the disease that killed Henrietta Lacks.
The role that HeLa cells have played in science since their birth is not limited to one vaccine but is fundamental and far-ranging. George Gey’s growth of HeLa cells in specially created liquid, or “culture medium”, led to the development of standardised techniques for growing cells in laboratories. Many concepts that seem second nature to all scientists today began in Gey’s lab. Skloot’s description of Gey’s lab is an interesting aside into Gey’s character as well as the technical aspects of growing cells in culture. Researchers will be interested to read about the introduction of sterile technique, a way of preventing bacteria and fungi growing in the rich culture medium and killing the cells you are investigating. More alien to the modern researcher are the tales of home-made laboratory equipment. Even in the current financial climate I don’t think scientists would make their own tissue culture rooms by hand or carve sinks out of stone from the local quarry! Gey was obviously very committed to his quest for immortal human cells. The introduction of standardised laboratory techniques developed in his laboratory resulted in the biological supplies industry, a multi-million pound industry today, and the new idea of biological materials as commodities.
The rapid spread of HeLa cells around the world was underpinned by the ability to send cells in frozen form, rather than in flasks in the warmth of scientists’ pockets. This concept would eventually lead to cryogenics including the freezing of human embryos. The technical advances associated with HeLa cell culture in the 1950s translated in due course to significant leaps including the cloning of Dolly the sheep, the isolation of stem cells and in vitro fertilisation.
The discovery that HeLa cells could be infected with poliovirus was a stepping stone to the development of a vaccine for this crippling disease. Since their birth HeLa cells have been infected with and subjected to all assaults known to man and this has helped us to learn a great deal about a variety of diseases. Another significant virus human immunodeficiency virus (HIV) was used to infect HeLa cells and this resulted in the discovery of the mechanism that the virus uses to enter the cell. HeLa cells have also been key in discoveries in tuberculosis and Salmonella research amongst many others.
In addition to the cells themselves, HeLa cell DNA has been used to perfect numerous techniques and processes. The cells were used to develop genetic tools such as tests for Down syndrome and preimplantation genetic screening for in vitro fertilisation. Haematoxylin, a stain that allows the visualisation of chromosomes was first used in HeLa cells. Being able to visualise chromosomes, containing the code for life, was a significant milestone in scientific history. In the book the family are presented with a picture of Henrietta’s chromosomes “painted” through a technique known as fluorescence in situ hybridisation (FISH). This gift was made by a scientist, Christoph Lengauer, whose research at Johns Hopkins University relied heavily on HeLa cell research. The effect on Deborah’s brother Zak is very touching.
Who told you you could sell my spleen?
A less obvious contribution of HeLa cells and Henrietta Lacks to scientific research is the effect that her story had on the way we now approach medical ethics. At the time that Henrietta’s cells were taken from her, the idea of “informed consent”, a concept that forms the backbone of current guidelines on human tissue research, was virtually non-existent. In the chapter “Night Doctors” we read tales of black people being abducted by white doctors to be guinea pigs in scientific research. Although some of these stories are based in black folk-lore, Skloot summarises real historical examples of vulnerable populations being used in research without their consent. The images of black bodies shipped in turpentine containers and families living in houses laced with lead will certainly shock modern readers.
In addition to the necessary historical references to consent issues in the main body of the book, the afterword focuses on the idea of consent and the contentious ethical and legal issues surrounding human tissue research in modern day America. Those of us not familiar with the current situation may be shocked by the opening paragraph of this section:
When I tell people the story of Henrietta Lacks and her cells, their first question is usually “Wasn’t it illegal for doctors to take Henrietta’s cells without her knowledge? Don’t doctors have to tell you when they use your cells in research?” The answer is no – not in 1951, and not in 2009, when this book went to press.
With the caveat that Skloot’s research focuses entirely on legislation and practises in the USA, the chapter is informative in considering the two prongs of this issue, consent and money. Whilst litigation is normally associated with financial motives, this chapter reveals that the issue of consent rather than money underlies the greater proportion of lawsuits related to human tissue research. I think the author summarises the difficulties well when she says “How you should feel about this isn’t at all obvious.” Agreeing to give your tissues for a known purpose, such as being on an organ donor register or contributing knowingly to a medical study, is one thing; your appendix being used, after having it removed, without your prior knowledge is quite another.
Interestingly, one of my early experiences as a researcher at the MRC National Institute for Medical Research, was attending a course devoted to the Human Tissue Act, the legal framework for human tissue research in the UK. It is clear that we have come a long way since those cells were isolated from the cervix of the young woman in Baltimore in the 1950s; however, the issues surrounding informed consent are not straightforward and perhaps never will be. Those of you who are interested in this topic and seek further information on this or any other aspect of the story will be satisfied by the extensive referencing at the end of the book in addition to further information on Rebecca Skloot’s website.
Closure and the Henrietta Lacks Foundation
The book is a passionate quest to tell the story of a woman whom science has largely forgotten. The tone of the book is not crusading but its passion contributes to the emotional involvement of the reader. The stress that the investigative journey puts on Henrietta’s remaining daughter, Deborah, manifests as troubling ill-health. It is a sad irony that the Lacks family struggled to afford good health care. However, we are left with a feeling of catharsis as the family come to terms with the loss of their mother and her existence as immortal cells in labs across the world. This heartwarming resolution peaks with the moving scene of Deborah and her troubled brother Zakariyya seeing their mother’s cells down a microscope in the very building where she died more than 50 years previously.
A portion of the revenue from book sales are being donated to the Henrietta Lacks Foundation. This foundation was set up by Rebecca Skloot and has given out its first grants to members of the Lacks family this year to contribute mainly to their access to education. On its board of directors sits Dr Roland Pattillo, the doctor who has been a friend of the Lacks family throughout their hard times and who helped Rebecca Skloot to contact them in the first place after an extended screening process.
Rebecca Skloot and the Lacks family set out to tell a story that needed to be told. The author has achieved this in a wonderful book that is destined to be a classic.
The Immortal Life of Henrietta Lacks is published in the UK by Pan Macmillan.