An Interview with Amy Patterson:
I was really intrigued by the lack of respect all of the doctors had for prying into this woman's life and the life of her children and family. For the ambulance squad we have to do reports after every call we get, and even though I'm young, I have to fill those out. There is so much that you need to do make sure the patient is OK with and be sure not to divulge extra information. You need to keep them informed but you can't tell everyone else about the certain calls or their medical condition. Those doctors didn't have any HIPAA rules to comply with and also seemed to lack compassion as well. The idea in the book that doctors would withhold unhealthy diagnoses was just crazy to me. Anytime I have worked with people, they want to know what's going on and they ask questions. Especially in an emergency situation, they are freaking out and want details. It seems to me today like common sense to tell your patients what is going on. I loved the research part of the book, and I believe that without the cells, there might not be all these new immunology options or as much known about cancer, but I would hope that they could find out in a different way by specifically talking to patients or obtaining consent to take their DNA. As well, it boosted the research side, and that is a social benefit, but it was very unfair to the family.
The unfairness revolved around things like the Chinese post-doc who told the Lacks that they were immunizing their children but really just wanted to steal their DNA. She assumed that because their mother had the special DNA, the kids would. She didn't just not inform them, she gave them false information, and that is not OK. There were no positive impacts of this on the Lacks; they are full of health problems. For example, in Deborah's old age, when she was traveling around with Skloot, she would get tremors, hives, and forget who she was with. Even though she was helping out the health of millions, it took a huge toll on the family. The book put doctors in such a bad light that I was happy to read that the grand kids were now being sent to school and educated as to what happened with their great-great-grandmother.
My favorite character was Christoph Lengauer, the researcher who gave Deborah the picture of the stains of the cells. He was the first doctor who took the time to explain and show what was going on in terms that they could understand. He didn't baby them, and told them what had happened, and it seemed like he did them a justice. After being lied to, cheated out of parts of themselves, they just needed clear information. Deborah even said they weren't looking for payment; she was happy that her mother had given so much for science, that she just wanted things to be leveled off or made fair. Justice might not be tons of money, but at the least that they should be afforded health care. Considering how much is being made off the sale of Henrietta's cells, and the poor living conditions the Lacks family and community are in, there is not social justice here.
I hope to stay connected to social justice in my studies at Bucknell. I am also in a class called "What happened to my privacy" that deals with the change in consent laws, and I will keep finding courses that explore these things.
winning essay by Amy Patterson
It is extremely interesting, yet also frightening to analyze this novel from the view point of someone in the medical field today. As an Emergency Medical Technician, it is horrifying to think that all of the issues raised in Rebecca Skloot's novel, The Immortal Life of Henrietta Lacks, are fairly recent and have not completely subsided today. The conditions of hospitals have skyrocketed in many places, but there will always be institutions with more lax rules than others. In the most extreme case, Henrietta's daughter Elsie, who was diagnosed with "idiocy," (more accurately cerebral palsy and deafness), was subjected to cruel treatment and became a research subject. Today there are many debates about patients' rights and what is entitled to them specifically. In The Immortal Life of Henrietta Lacks, a surprising protagonist, Henrietta's daughter Deborah, is left to deal with all of these issues without the one person who really could give her the complete truth, her mother.
Race plays a rather large role in Deborah's struggle for gathering the truth about her mother and HeLa cells. In the fifties when Henrietta was battling her cancer, being African American was not at all helpful. Even at a large, prestigious hospital like Johns Hopkins, there was, at most, one black ward with much worse conditions than its white counterpart. There was a stereotype that included the inability of African Americans to pay hospital bills. Henrietta's family had very little, like many other families in the south at the time. Doctors knew to treat black patients quickly and efficiently; they just went through the procedures with an air of indifference. When Henrietta was admitted at Hopkins, doctors actually misdiagnosed her cancer and therefore killed her with radiation that was unnecessary. Many times a misdiagnosis can occur from not taking the proper amount of time to get to know a patient or fully understand what the problem at hand is.
Society throughout the Twentieth Century cast off many people like Henrietta because of her race. When the Lacks family started to ask questions about their mother and her cells, they remained ill informed and were taken advantage of multiple times due to their lack of money and education. Any poor black families during this time period were denied many of their basic rights. Today, there is no doubt that racism still exists, but in the medical field, everyone is bound by law to treat everyone by the best of their abilities, without prejudice. No one can be denied care because of race, religion or ideas.
Ethically, the debate is brought up on many occasions whether the Lacks family should get compensation for Henrietta's cells or at least for the misdiagnosis and mistreatment of Henrietta. On one side, there is no law that binds tissues to a specific body once they have been removed. They are freed up to benefit scientific progress and research at that point. This principle seems hazy when one person's cells are used to produce a multi-billion dollar, worldwide company. The situation becomes even more controversial if the cells are linked to many necessary vaccines, cancer research, cloning and so much more. Half of Henrietta's family was and is still very upset that no money has filtered to them throughout all of this excitement. Deborah on the other hand took a nobler route by simply being proud that HeLa cells have done so much more the world. She wanted her mother to get the recognition she deserves while not halting scientific progress. Today if the Lacks's sued because of misdiagnosis of Henrietta's cancer, I believe there should be some sort of compensation awarded. Many doctors only focus on the cells and in turn, dehumanize the Lacks family. Many forget that these are real people who are going through hard times, dealing with death and financial problems. Rebecca Skloot focused on giving voice to the people behind HeLa cells, a long overdue action.
Fabrication of information in the medical field appears to be morally wrong according to today's standards, correct? Until a few years ago the Lacks family continued to be tricked and given false details since Henrietta's death in the fifties. Rebecca is the sole person to be completely honest with Deborah and her siblings form the start. During her reporting, she gathered more and more people that they could trust to explain the whole truth. Not being educated enough to understand everything about HeLa cells is not an excuse for researchers to leave the Lacks family in the dark about their mother. Dr. Christoph Lengauer took time with Rebecca, Zakariyya and Deborah to explain the basic about cells and exactly what Henrietta did for science instead of just saying that she cured cancer. Morally, few people took the high ground because the situation could be exploited so easily with the lax guidelines that existed. Unlike doctors and researchers before her, Rebecca got consent to take information and pictures from the Lacks family for her novel.
Today, consent is one of the biggest priorities in patient care. In an ambulance, paperwork needs to be filled out for every call with very detailed and exact documentation. Any medical professional even needs to gain consent before performing any treatment or care. This is a basic right of the patient; they truly can choose if they want help or not. If a patient cannot make a thoughtful and informed decision, such as if they are unconscious or under the influence, consent is ceded to the medical professional or anyone who can make a decision in the patient's best interest. Because the Lacks family was never fully informed, they gave consent to certain situations that ended up hurting them more in the end. Only much later do they finally learn that "cancer tests" do not exist and that their attorney was a fraud.
To learn the story behind HeLa cells, that there is actually a person with a family behind some of the most important medical advances, is incredible. It makes what I do as an EMT so much more personal. Her cells have made a huge impact and have saved millions of lives in the past fifty years. Besides her cells, Rebecca and Deborah worked hard to bring light to so many issues with the medical system that still are being worked out today. Even before I read this novel, I walked into an assisted living home to answer a 911 call and witnessed cruelty; patients sitting on over crowded floors, half dressed, treated badly. Upon reading this novel I have come to realize a horribly sad truth, had anyone compared this living situation to a hospital in the fifties, it would look pretty enticing. The medical field has advanced so much since then and I cannot even imagine what people like Henrietta and Elsie went through during their days in hospitals. There are so many issues left to resolve today, but we also have to remember how far it has come; many thanks are due to Henrietta, Deborah and Rebecca Skloot.