The Immortal Life Of Henrietta Lacks And Her Role In Biomedicine
The Immortal Life of Henrietta Lacks by Rebecca Skloot is an in-depth look at the life of Henrietta Lacks and the benefits and pitfalls of using her cell’s in biomedical research. The book, a work of nonfiction, also delves into the lives of Henrietta’s relatives and children. It explores the importance of medical consent regarding research on individuals’ tissues and cells and looks the impact medical research can have on a family. There are many themes in the book that particularly impacted me especially as I embark on a new career as a nurse.
One of the scenes that impacted me the most from the book is when Deborah, Henrietta’s daughter is spiraling through all of the things that have been done to her mother’s cells. On page 196, there is a passage that starts off with,” The more Deborah struggled to understand her mother’s cells, the more HeLa research terrified her. When she saw a Newsweek, article called PEOPLE-PLANTS that said scientists had crossed Henrietta Lack’s cells with tobacco cells, Deborah thought they’d created a human-plant monster that was half her mother, half tobacco. When she found out scientists had been using HeLa cells to study viruses like AIDS and Ebola, Deborah imagined her mother eternally suffering the symptoms of each disease: bone-crushing pain, bleeding eyes, suffocation. And she was horrified by reports of a “psychic healer: who, while conducting research into whether spiritual healing could cure cancer, attempted to kill HeLa cells by a laying on of hands.”
The passage and many other parts of the book go on to detail how every little thing that was on the news about her mother’s cells truly scared Deborah because she didn’t understand that it wasn’t actually her mother that was being shot to the moon, put in a nuclear bomb or being tested with deadly diseases and that is was simply a part of her body that was left behind and her mother could not actually feel all those things being done to her cells. The fact that the scientists and physicians that had worked with the HeLa cells had not explained the situation to Henrietta’s family or educated them on the type of research being conducted led to lifetime of worry and anxiety for many members of Henrietta’s family.
This theme of the book really changed my view of people in general because I often assume that everyone knows the same things that I know based on what is in the news or popular in culture. I think many providers assume that the patient has a general understanding of whatever is being told to them. When, in fact, the majority of the US population read at an 8th grade reading level (Eltorai et al. 2014).
The book helped me understand that many people, like Henrietta and her family, grow up in stressed situations without access to a proper education. In the United States, we have a wide gap in the education level of citizens with some being very highly educated and some never having gone past the 8th grade. With these discrepancies, it is important the informed consent documents and explanations are created to provide a deep level of understanding to every patient regardless of their education level. Without universally comprehensible consent documents, researchers are just perpetuating the pattern of taking advantage of uneducated people in society.
The book impacted my future as a provider by ensuring that I take the time to explain pertinent information in a slow and understandable way with each patient. There are many methods including the teach-back method that I could also use to ensure that my patients understand what I am telling them. This point is highlighted in the book when Dr. Lengauer finally took the time to show Henrietta’s family the HeLa cells. By taking the time to show the family the HeLa cells and describe how they had been used in research, Dr. Lengaer provided Henrietta’s family with long overdue peace. If that explanation had happened at the very beginning, then the family could have lived a more stress-free life and known that their mother was at rest and was not actively involved in the ongoing research of her cells. One of my main goals in my practice will be to avoid any misunderstandings with diagnosis, medicines and patient education by taking the time to ensure that explanations are understood by all.
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