CAME ACROSS THIS FROM ANOTHER SITE...a good read?...did not read the book as such...you might be interested...
The world of medicine and science and the language used to navigate it is easy to get lost within for anyone, regardless of education or social status. Rebecca Skloot did a great job in her book bringing to life Henrietta Lacks, her family and connecting us to the world of science and what all came to existence through a sample size of tissue no larger than a dime.
As Langauer stated, the importance of knowing who that person is, past a vial of cells and its impact on history, Skloot did an excellent job of bringing Henreitta, her family and the impact her cells had on medicine today, to life for the reader. Henreitta, her immediate family, as well as her own offspring had very limited educations. Skloot clearly demonstrated in her book the racism and poverty happening in the 40’s and 50’s to African Americans, and this extended into medical care or lack thereof as well. African Americans during this time had a lot of superstitions about evil spirits, the power of karma, “night doctors”, and you simply didn’t speak of things like cancer or the dead. A common story told to black children that they told their children were about these “night doctors” that would snatch black people off of the streets and do experiments and torture them for science (Skloot, 2010). It wasn’t totally false in the fact it was based off of truth when slavery was still around, doctors would test drugs and operations on black slaves.
Henreitta was a very private person it seemed from reading the book. She didn’t even tell her own husband she was sick with cancer. The only two female cousins she disclosed it to was because she had to have help for her treatments. “Day wouldn’t have understood the concept of immortal cells….the only cell he knew was the one his son was living in…he did what he always did and nodded and said yes when a doctor spoke to him about something” (Skloot, 2010). This era you didn’t question doctors, they knew best. Skloot (2010) also stated, “there were no laws or codes of ethics that required doctors to ask permission before taking tissue from a living patient, the law made it very clear only about performing an autopsy or removing tissue from the dead without permission was illegal” (p. 67).
Henrietta’s family and children had such little knowledge of what HeLa was, when they found out they thought a part of Henreitta was still alive and was being tortured and used and abused for science. I think this had the greatest negative emotional impact on her family and children, with their limited education and no understanding of science, they thought these evil scientist had kept part of their mother alive and were abusing and torturing her. Even when Skloot interviewed the children year’s after they were aware of HeLa, they still didn’t understand what a cell was or what all impact their mother’s cells had had on science and the advancement of medicine. I loved what her son Sonny said on page 116, “…she (Henreitta) liked takin care of people, so it make sense what she did with them cells…”(Skloot, 2010). In fact all of her family and children at one point in the book or another was quoted stating how Henreitta would have been happy to help others, it’s a miracle what she’s done, and the pride they have for that connection.
Money was clearly an area of contention for the family, but I found it interesting that Gey and Hopkins hospital both never took the cells with the intention of profit, nor did they ever profit anything from HeLa. Gey even came back and tried limiting the use of HeLa according to Skloot (page 78). Unfortunately, since HeLa wasn’t patented, he had no control and that was where major profits were made from them. When Gey came down with pancreatic cancer himself later in life, he wanted his tissue to be harvested for more research and gave himself to experimental treatments to further medical knowledge.
What medical or science related people contacted the Lacks family they never either took the time or didn’t care to explain what HeLa really was, they were very focused on research and that is unfortunate. I think the family would have had a lot more pride and a lot less fear if someone would have explained in simple terms what had happened to their mother, what HeLa was and what it was truly doing to improve the lives of millions and continuing to do so even today! This is the greatest lesson I learned in ethical leadership from the book was to simply connect to patients and families, make sure they understand and are informed. Miscommunication and assumptions never end well for anyone.
Even though directly Henreitta’s case didn’t create informed consent and the world of patient privacy as it is today, it was essentially the beginning of the end for it. It was the aftermath of the Southam trial that had to do with injecting HeLa into patients without their knowledge or consent that led to the existence of informed consent in 1971 (Skloot, 2010).
Ways that medical professionals can prevent unethical practices is to know the law, follow the law, be accountable, beneficence and nonmaleficence. Henreitta didn’t just change the world of medicine and science, it also changed how we approach and treat all humans regardless of age or race. Based off of the stories of family that knew her, I would say she would have been very proud and happy to know that something so beautiful came from such a tragic diagnosis.
Reference
Skloot, R. (2010). The Immortal Life of Henreitta Lacks. New York, New York: Crown Publishing Group.
