The Immortal Life of Henrietta Lacks

In the book The Immortal Life of Henrietta Lacks, Rebecca Skloot paints a daunting picture of the ethics (or lack thereof) that consisted of the 1950’s medical profession, and the toll it took on the survivors Henrietta left behind. 

            Henrietta Lacks grew up in Clover, Virginia on an old slave plantation-turned tobacco farm. She lived in a ‘home-house’ with her future husband, David (or Day) Lacks, and the home-house used to serve as slave quarters. Alongside her cousins, Henrietta grew up working on this tobacco farm day in and day out for their grandfather in what was called ‘Lacks Town’. Henrietta had her and Day’s first child right after her 14th birthday, a baby boy they named Lawrence. Four years later, she gave birth to her first daughter, Elsie. Elsie would eventually be sent away to a mental hospital on the grounds of idiocy, and the younger kids would rarely ever hear of her. Two years after that, when Henrietta was twenty and Day was twenty-five, they got married. Soon after that, the Great Migration occurred and some people that Henrietta and Day knew moved up north to a place called Turner Station to work in the steel mills doing hard manual labor. Their cousin Fred came to see them to tell them he was going north and if he made a life up there, he would come back for them. He eventually came back for them, and the Lacks family moved up north as well.

            Henrietta and Day settled down up north and expanded their family. They had three more children: Sonny, Deborah, and Joe, respectively. Shortly after Joe was born, Henrietta started to feel some lumps in her cervix. The only two people she told about this were Margaret and Sadie, who were her cousins. She eventually decided to go to Johns Hopkins, which was a hospital in downtown Baltimore that was known for treating colored folks. She went there around 1951. At the same time that Henrietta received her cervical caner diagnosis from Johns Hopkins, there was a doctor conducting research on cells, George Gey, who happened to be the head of tissue culture research at Hopkins. His mission was to find cells that were immortal; meaning they would continue to grow on their own outside of the body. Specifically, he was searching for malignant cells to try to find the cure for cancer.

            After Henrietta received word of her cancer, she did not tell anyone in her family. She simply asked Day to take her back to Hopkins so that they could run some more tests. Before these tests, she signed a consent form that was rather broad. She went back into the patient room and had dozens of tests performed on her. The next day, she would start her first cancer treatment. While she was unconscious waiting for the treatment to start, the physician on duty took cells from one of her tumors without telling her they were collecting samples at the hospital or even asking if she would like to be a donor. He then continued the radium treatment, took the appropriate notes, including the fact that he took tissue samples for Dr. Gey, and Henrietta was wheeled back into her room.

            Dr. Gey had an assistant named Mary Kubicek who usually handled all of the samples. He informed Mary he had a new sample for her, and she seemed indifferent, since every other tissue sample she had dealt with before had died. However, when she saw Henrietta’s, she alerted Dr. Gey that this was the sample he had long waited for; immortal malignant cells. She labeled the tube HeLa, the first two letters of Henrietta and the first two letters of Lacks. Dr. Gey told a few of his closest colleagues about this fast-growing cells. They all asked if they could have some of them, and Dr. Gey agreed. Henrietta knew nothing of these cells growing in culture in Dr. Gey’s lab.

            Henrietta eventually told Sadie and Margaret about her cancer, but they were the first ones to know. After a few more radium treatments, Henrietta asked the doctors when she would be well enough to have another child. She was never informed that the treatments would make her infertile. She told them if she had known that, she never would have gone through with the treatments. Eventually Day knew she had cancer, and the radium treatments turned her skin a charcoal black. The cancer began to spread rapidly, and the doctors continued radium treatment until they determined there was nothing else they could do. The tumors spread to almost every part of her body, and on October 4th, 1951, at 12:15 am, Henrietta Lacks passed away.

            The first time I heard about Henrietta Lacks was in this class, when we were told we would read this book. Before then, I had never heard of her name or even of HeLa cells. I decided to do a little experiment in which I asked someone that had a doctoral degree in psychology if they had ever heard of Henrietta Lacks. They replied no. I followed up by asking if they had ever heard of HeLa cells, to which they immediately replied, “oh, of course”. This unfortunately confirmed my thinking that those in any sort of science learn about the HeLa cells, but never about the woman behind the cells. Her cells have gone on to do extraordinary things for science, which is incredible, but I struggle with the fact that her family continued to live in poverty and could not retain health care at any point in their lives. I firmly believe that her name is not more well known because her cells were taken without her knowledge and because she was a colored woman. If she had been white, and had consented, I’m sure her name would forever be linked with her line of cells. Unfortunately, our society does not like to think that a colored person could have made such an enormous contribution, and many people would struggle with the fact that she didn’t know she was making this contribution.

            The main issue I grapple with is if it was worth it to violate Henrietta Lacks’ rights in order to gain this scientific knowledge. It was only after her rights were violated that these cells made this contribution to science, and without these cells, the scientific community would be much farther back than it is today. But I don’t think it is okay to justify taking her cells for scientific knowledge when it was not known that they would have such a huge impact on the scientific community at the time the cells were taken. However, this was a much different time. This was the same era that the Tuskegee study was going on under government funding, so it is very believable that not only were Henrietta’s cells taken without her knowledge, but many others as well. We just don’t hear about the other cells being taken because they did not successfully multiply on their own outside of the body and make these contributions to science. At the end of the book, the author makes a note that even when this book went to press in 2009, there are still no laws on the books about using tissues for research. I know for a fact that I don’t always read consent forms carefully when I sign them, even though consent forms are law and are mandatory now. I know I will from now on, but tissue samples are a touchy subject because they have the potential to help science in many ways, but those who contribute the samples either never know that its their cells that helped make these advancements or they never receive any benefits for contributing.

            I was not surprised in the slightest by the way the Lacks’ family was treated in regards to their mother’s case. I was entirely understanding of the way they reacted. I feel that if they had known much earlier about what was happening, they might have had a much better chance at receiving some financial compensation. However, they were kept in the dark for at least twenty-five years after the fact. That’s a long time to pass for them to then start to understand and gather their bearing to figure out what even happened. They were completely taken advantage of because they were colored and poorly educated. I think they had every right to be skeptical of the author of this book, considering everything that they had gone through with Cofield. Not only did they all have to deal with their mother dying at such a young age, but also the repercussions of her death (Gladys being abusive).

            Another issue I find difficult to deal with is that Dr. Gey never sold Henrietta’s cells for profit. He simply gave them away under the belief that those he gave them to would put them to good use. I don’t necessarily know if it is his fault that one of the people he gave them to decided to use them for profit. This is also why it was incredibly difficult for the Lacks family to try to gain financial benefits from their mother’s cells. I believe Dr. Gey genuinely intended to put the cells to good use and try to only use them for scientific advancements and never for profit. However, the only proof of this is merely hearsay and the Lacks family does not do so well with hearsay.

            Deborah definitely suffered the most from this whole catastrophe. She struggled with the same issues that I did, that her mother’s cells were taken without her knowledge, but they had such a huge impact on the scientific community. However, the least the medical community could have done for this family was make sure that they would have health care coverage for the rest of their life. It breaks my heart that their mother’s cells had this huge impact but that they couldn’t even go to the doctor when they were sick. The Lacks family was merely left to the wolves with so much anger and resentment that they didn’t know what to do with. Another huge ethical issue Deborah had to deal with was how her sister Elsie was treated in the mental institution she was put into. It wasn’t written anywhere, only inferred, that Elsie was used in experimental medicine for patients with epilepsy, and that was what killed her. She now had to deal with two family members being wronged by the medical community. It would have been incredibly hard not to completely lose faith in the medical community after having two situations like that hit so close to home. The Lacks family will most likely never be completely repaid for their contributions, especially now that they have decided to give up the fight. But I don’t think that means that they are okay with everything that happened, nor will they ever be.