Henrietta Lacks, as HeLa, is known to present-day scientists for her cells from cervical cancer. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells were taken without her knowledge and still live decades after her death. Cells descended from her may weigh more than 50M metric tons.
HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks was buried in an unmarked grave.
The dark history of experimentation on African Americans helped lead to the birth of bioethics, and legal battles over whether we control the stuff we are made of.
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As the name implies, the Not Your Ordinary Book Group was always intended to break away from what is expected of traditional reading groups. Keeping this in mind, we have always tried to offer a wide variety of genres to the group, which has led to a very diverse list of titles chosen for discussion. I tend to read fiction myself, but I kept seeing this particular title on lists of recommended reading and it looked interesting, so I thought the group might want to try something really different. I am so glad that I suggested it.
I trained as a biologist in the late 1980s in the UK and yet I have no memory of being taught about Henrietta Lacks. Admittedly, I did not take any courses that depended upon the use of human cells, but it still seems that I should have been aware of her massive contribution to medical research. Of course, that contribution was not one that she made herself, nor was she even aware that some of her cancerous cells had been passed along to be grown in a lab, but it seems to me that her name should be as famous as those of Fleming, Pasteur and Jenner for her influence upon humanity’s collective health. Her cells revolutionized our ability to study human diseases and conditions, leading to countless vaccines and treatments that have saved, prolonged and improved lives. Yet, she died in the most horrible pain and her family has continued to live in the poverty that marred her own short life.
This book gives us a brief history of Henrietta herself, although there is little detail and very few historical records for the author to draw upon. The medical accounts of her illness and subsequent death are terse and clinical, as one would expect, especially given her status as a poor and ill-educated black woman in the 1950s. Other details are dependent upon the memories of her surviving relatives and share the horror of a person consumed by cancerous cells that have proven to be almost immortal in the laboratory. Her autopsy proved that the cancer that began in her cervix had spread to most of her body in a short period of time, so it is hardly surprising that later research showed that HeLa cells could grow rapidly, filling their containers and even contaminating samples of other human cells being grown in the same labs. Their ability to grow and reproduce endlessly makes HeLa cells the perfect research tool because experiments can be repeated endlessly on exactly the same cells, and they have become invaluable to the scientific community.
It is very difficult to read the brief descriptions of the agony that characterized the last few days of Henrietta’s brief life. However, the most shocking aspects of the book are those dealing with the appalling living conditions of Henrietta and her family, even her children and grandchildren. Squalor and poverty, coupled with poor education and a segregated health care system made Henrietta’s early death seem almost inevitable, but I was inexpressibly depressed to see that 50 years had not shown a marked improvement in the family’s social conditions. The pattern of poverty, drug abuse, criminality and the non-treatment of both physical and mental illnesses was repeated through the generations although I was very heartened to learn that one of Henrietta’s great-grandchildren was about to go to college when the book was published.
It is very easy to blame the research community, and John Hopkins in particular, for their cavalier attitude towards using Henrietta’s cells without permission and then profiting from their application. However, samples were being taken from many sources in an attempt to find a source of human cells that could be used for research outside the body. This means that many, many samples were tried and died before Henrietta’s miraculously survived. The man whose lab was successful in cultivating the HeLa cells did so for no profit whatsoever, and sent samples of them around the world free of charge, unlike other less scrupulous practitioners who did indeed profit from cells obtained with little, or no, informed consent. I can also understand why John Hopkins did not want to admit any financial responsibility towards the Lacks estate because it could have set a precedent for claims by other patients. However, it did seem that somebody, somewhere should have felt morally responsible for making some recompense to the Lacks family and I was rather disappointed that nobody had stepped forward to do this.
On the whole, the actions of the scientific and medical communities were poor in many respects with regards to Henrietta and her family, but the author provides many examples of other cases showing a similar disregard for patients. As is often the case with early work in a new field of research, ethical issues only became apparent after a certain amount of damage was done. Whilst most parties were acting in good faith, their ignorance of potential consequences led them to behave in ways that seem scandalously unethical when viewed from our perspective.
As our first foray into Non-Fiction, this title was a great success and received a unanimously high rating from the whole group. We were perhaps most impressed by how the author’s tenacity in pursuing this story of many years as her relationship with the Lacks family waxed and waned. Her efforts have produced a massively informative book that is still easy to read and understand. She refrains from being too judgmental about the researchers directly involved with the first production of the HeLa cells and so maintains an impartial air throughout. She is obviously outraged and moved by the struggles of Henrietta’s descendants, but does not allow that feeling to bleed through into her writing.