We’ve all heard of HeLa cells, and the incredible research performed on them, but where did they come from and whose cells were they? Naomi Thorne reviews Rebecca Skloot’s The Immortal Life of Henrietta Lacks, to shine a light on the ethical disaster that Lacks and her family were victims of.
As scientists, how many of us use cell culture on a daily basis? The use of immortal cell lines is a fundamental methodology in 21st century biology that we would struggle to do research without. Thanks to the development of human cell culture, we are able to understand the mechanics of our cells better than ever before. This has allowed for the creation of vaccines, the progression of therapeutic drugs to clinical trials, and countless biological discoveries.
In the 1950s, the invention of the first immortal human cell line, HeLa, provided a low-cost way to conduct experiments on living human cells for the first time. One of the most significant advantages was that this new approach helped mitigate the need for direct human experimentation in early-stage research, greatly reducing the widespread ethical concerns around this practice. The cells provided a ground-breaking and accessible model, and the scientists who had obtained the cells were celebrated as pioneers. But what about the real person whose cells enabled this breakthrough in preclinical research? Who was she, and why was she so important?
Her name was Henrietta Lacks, and her story has finally been told in the book “The Immortal Life of Henrietta Lacks” - a powerful read that raises questions about the ethics of this scientific discovery.
The author, Rebecca Skloot, first learned about Henrietta Lacks when Lacks was mentioned, fleetingly, in a school biology lesson and briefly acknowledged as the origin of the HeLa name: “He” from Henrietta, and “La” from Lacks. But that is all she was – a name. People knew the story of the cells, but what was her story? From that moment on, Rebecca felt compelled to discover more about Henrietta. She found that, contrary to assumption, Henrietta Lacks did not voluntarily donate her cells to science. Unearthing a huge ethical debate, this book follows Skloot on her journey to ascertain how Henrietta’s cells came to be in the hands of scientists, and whether her living family even knew the extent of her contribution to modern science. Over 10 years, the author built a relationship with Henrietta’s family, particularly with her daughter, Deborah, who was also in pursuit of information about her mother. Together, they spoke to the extended Lacks family, as well as friends, doctors and scientists to build a picture of Henrietta’s life.
Henrietta Lacks was an African American woman, born in 1920 to a family of tobacco farmers in Roanoke, Virginia. She married, had children, and then moved with her husband to Maryland in 1941. Shortly after the birth of her fifth child, she was hospitalised at Johns Hopkins – the only facility in the area that offered care for black patients – for an extremely aggressive form of cervical cancer. Despite several treatment attempts, the cancer was stubborn and Henrietta passed away in August of 1951, aged just 31.
As her family grieved, they were unaware that scientists had taken some of Henrietta’s malignant cells without permission. They began to culture these cells in the lab and attempted to establish a cell line for experimental use. Without Henrietta’s knowledge or consent, several biopsies had been taken from her cervical tissue, both in life during treatments, and in death during autopsy. Her tissue was passed on to a cancer researcher, and her rapidly dividing cancer cells enabled him to create the, now world-renowned, HeLa cell line. Horrifyingly, her family did not discover this until decades later.
What had started as an inquisition for Skloot became a 10-year-long search, first for answers and then for justice, as she learned about the range of ethical concerns relating to Henrietta’s cells. Not only had the cells been taken without consent, but they had subsequently been commercialised – bought and sold across the world, while the Lacks family struggled to afford healthcare. In addition, Skloot found that the family’s medical records had been published without their knowledge, as metadata, to help scientists understand more about the HeLa line and its origin.
Within the book, Skloot also discusses the absence of communication with the Lacks family, and finally gives them the tools to understand the science behind why Henrietta’s cells are so important and how, and why, they are still alive today. In addition to the discussions surrounding concerns directly relating to Henrietta’s case, the book highlights wider issues experienced by other members of the Lacks family, such as racism and abuse within the healthcare system. At times the accounts are difficult to hear, but are extremely important even today, years later, to understand the hardship experienced by Henrietta and her family over the years and contextualise the cell line’s continued use.
Overall, the book tells the truly compelling story of Henrietta Lacks, humanising her from a mere name in a science textbook to a real person, with a family looking for justice. Packed with information, it completely rewrote my understanding of how cell culture began. Like many people, I had previously assumed that most cell lines were derived from tissue donations, by voluntary donors after giving informed consent, and that their anonymity and privacy would be ensured. This book questioned these idealistic thoughts and raised topics I had never considered, such as the past and present ethical and legal guidelines surrounding patient tissue donation. Aside from the scientific explanations, it tactfully and empathetically told the story from the Lacks family’s viewpoint, allowing me to understand and appreciate what the family went through and how they are still impacted, to this day, by reverberations from the creation of the HeLa cell line.
Thanks, in part, to this book, people are finally beginning to acknowledge and recognise the role of Henrietta in the development of cell culture. I would highly recommend reading, or listening, to this book, and I urge anybody that works with cell lines to take the time to hear Henrietta’s story, about the contribution she unknowingly made to the biological technique we use every day.
This article was written by Naomi Thorne and edited by Rebecca Pope. Interested in writing for WiNUK yourself? Contact us through the blog page and the editors will be in touch!
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