The book The Immortal Life of Henrietta Lacks, by Rebecca Skloot covers multiple topics regarding legal, cultural, and medical issues in health care through the story of Henrietta Lacks, her children, and her immortal cells. Henrietta Lacks was born in 1920 in Roanoke, Virginia. While living in what her family called the “home house”, Henrietta shared a room with her first cousin David, or Day. In 1935, when Henrietta was 14, the two had a child named Lawrence. They later had another child, Elsie, in 1939 who was mentally disabled.
They eventually moved to Maryland, where they had more children and placed Elsie in the Hospital for the Negro Insane. In January of 1951, Henrietta had a lump in her cervix that she had diagnosed at John Hopkins hospital, who offered free health care to blacks. Howard Jones, a physician, diagnosed her with cervical cancer. George Gey, a scientist took samples without the consent or knowledge of Henrietta. Henrietta lacks had a very rare form of cancer that spread very quickly through her body, killing her seven months later at age 31.
George gey found that when these “HeLa” cells were put in culture, they would divide at an extreme rate and never die, unlike any other cells. George Gey knew these had potential. Henrietta’s infant daughter, Deborah, grew up to become obsessed with her mother, her cells, and what happened to her sister. Once finding out that Hela cells would not die, George Gey sent test tubes filled with Hela to some of his colleagues. The cells were spread around until they began being mass produced. This grew into a multi-million dollar industry.
The family of Henrietta lacks did not know about these cells for 25 years, and got nothing for them. At that time, doctors could take any part of you that you no longer needed or got removed without your consent or knowledge. It was some years later that consent was required. Though this is the case, if you get anything removed with your consent, doctors can, and usually do, keep them. They can do almost anything with it. Henrietta’s family was shocked when they found out about Hela and that they were being sold for profit.
Some children wanted to sue, while Deborah was convinced that her mother’s spirit wanted her story to be told. Rebecca Skloot was her partner in this. They both went on to achieve this goal. Rebecca would learn about Deborah and her family while also helping find information about Deborah’s sister Elsie and her mother. At the same time they found out about their mother’s cells, scientist took blood samples from Henrietta’s children and husband without informed consent. This became illegal a few years later. They told them that they were going to use it to see if any of them had to worry about the cancer their mother had.
In reality, they took it for their own research and benefit. Through research, Skloot and Deborah found out about Elsie who was sent to the Crownsville hospital for the negro insane. She was treated poorly, abused, and experimented on without consent. Eventually, at age 15, Elsie died. Mentally ill people were not understood at this time and were not treated as they should have been. Most of this story could not happen today. Laws have been made to protect people. Doctors can not share medical records like they did with Henrietta without consent.
They can not experiment on or take a part of you without informed consent. The incident in the book where prisoners were injected with Hela cells without their knowledge could not happen. What could still happen though is if you give consent to have something removed from yourself, doctors can, and usually do keep it. It is still questioned whether anything previously attached to you, but removed with your consent is still your property. It can be argued that even if a doctor or scientist were to experiment on or research your organic material, they could not sell or give it away.
The reason for this is DNA tests. Anyone can test tissue and find out who it belongs to. Because of this, giving or selling someone’s organic material without their consent could be an invasion of privacy. As a consumer of health care, this book has made me a little more cautious and skeptical. The reason for this is because every time I go in to get a blood test, to get something removed, or anything else of the sort, I am handing over what I believe to be mine. I am giving them access to my identity, diseases I may have, allergies I may have, etcetera.
They could take that material and use it in just about any way they want. In a summary of what I got from this story, I would say that one woman’s cells obtained and used without consent changed the medical world forever whether it be legally, scientifically, or morally. If Henrietta’s cells had not been taken, the world would not be what it is today scientifically and medically. Many people could have died without cures and immunizations Hela helped develop. We would not have known what effects certain atmospheres, such as space, have on cells or what the human genome looked like.
Hela cells are still making a difference today. What was most important about this book though is that it showed there was a human and an interesting story behind HeLa. Hela was not just a cell group used for research. It was a sample from a dying black woman. If someone asked me if they should read this book, I would say, and have said, yes. This story covers so many ethical issues and topics of discussion through an unbelievably but true story in a spectacular way. I have personally learned quite a bit from reading this book and others should share the experience.