One of the things I’ve been required to do in a college course I’m taking was to read the 2010 book, “The Immortal Life of Henrietta Lacks” by Rebecca Skloot to generate some thought revolving around the issue of ethics in medicine. I was asked to decipher some of the ethical dilemmas surrounding the portrayal of the Lacks family and whether or not it is important to know of the woman behind the famous cell line HeLa. How then would I be able to take that information and further enhance my own understanding of ethical leadership to avoid perpetuating further instances of unethical practices? This book successfully blended the medical importance of Henrietta’s scientific contribution, while capturing the aspect of what that meant to her family, who were kept in the dark for over twenty years about the exact nature and extent of their mother’s historical prominence. While reading this book, as someone who is not African American, there are some rather uncomfortable reminders of the differences that exist between varying diversities whether it is race, gender, age, education, income or otherwise. Some examples of the unethical treatment towards black men and women that were brought up in this book are the 1930's Tuskegee syphilis study, the Mississippi appendectomies that involved unnecessary hysterectomies to prevent black women from reproducing, and the noticeable lack of research funding for sickle-cell anemia that notoriously affects African Americans Since those were historical events, it was easier to view them purely through a lens of context. However, the way we are introduced to the family throughout the book happens more organically, and thus became increasingly difficult to separate myself from their plight and circumstances, which are still on-going. I thought rather long about whether or not it was necessary to showcase the remaining Lacks family in a manner that exposes their ignorance of basic scientific concepts, while highlighting their issues with drug use, depression, alcoholism and abuse. Did it truly enhance the story, was it relevant, and did it matter? I think Henrietta Lacks youngest daughter Deborah summarized they way I feel about this situation best after a particularly violent vocal outburst from her younger brother Zakariyya, when dealing with his feelings of loneliness, confusion and abuse. During a conversation with Ms. Skloot, Deborah (in reference to Zakariyya’s comments) stated, “see, everybody else never let him talk because he speak things the way he want to. I say let him talk, even if we be upset by what he’s sayin. He’s mad, gotta get it out, otherwise he gonna keep on keeping it, and it’s gonna blow him right on up”. In the book’s foreword, this accounting of the language used is addressed by one of Henrietta’s relatives, which I find delivers on the need to capture it for posterity. If an attempt is made to correct or lessen the impact of an individual’s words, regardless of the manner in which they were delivered, you have betrayed their life, experience and sense of self. I see no viable means of improving unethical practices if we are unable to digest how those who lived through them recall it. For this reason, I found the portrayal of the family to be both prudent and appropriate. Christoph Lengauer, a cancer researcher who once provided Deborah with a painted picture of her mother’s chromosomes, noted that, “whenever we read books about science, it’s always HeLa this and HeLa that. Some people know those are the initials of a person, but they don’t know who that person is. That’s important history” (Skloot, 2010, p. 266). In my opinion, this illustrates why unethical behavior was, and is, able to take root in the first place. We can see another prominent instance of this belief in action following the end of World War II. The Nuremberg Doctor’s trial was responsible for bringing about the 1947 code that established the intent of informed consent and its role in medical research. This came as the result of the horrible human experimentation done to Jewish prisoners held in Nazi concentration camps. According to the United States Holocaust Memorial Museum, prisoners held at Auschwitz were branded with a serial number tattoo that served as their only form of identification, namely to account for their camp registration and death. As I try to draw comparisons between Lengauer’s quote and the Nazi practice of tattooing serial numbers on prisoners, both instances highlight the absence of a person’s essence. When we view others as products instead of people, numbers instead of humans, it removes any semblance of responsibility, morality and ethical conduct. Attaching a face, a name and a story to our fellow man is one way to avert the mistakes of our past. I find Languaer’s belief that an individual’s importance should come first in the scheme of their history, to be correct. In any profession, the utmost care should be taken to preserve a person’s dignity. During the 1950’s, medical attitudes concerning African Americans receiving free care in the public wards at John Hopkins tended to skew more towards the belief that experimentation in the name of medical research was an appropriate form of payment. Dehumanizing this sect of our population was one of the largest contributors to the overall era of unethical behavior that occurred during this time. Having finished this book, I tried to correlate aspects of this story to actions I can take within my own department. In radiology, my interactions usually just involve myself and a patient. A provider places an order for the exam and I will complete it. However, blindly accomplishing what a doctor requests is not the best practice. It lowers my patient-centered focus and promotes more of a tunnel-vision approach. There is a large portion of my patient base that truly do not understand why they are in my section. It would be unethical of me to take advantage of a patient’s misunderstanding or lack of knowledge, as was done in Henrietta Lacks case, to simply do what I was told. It boils down to taking the time and providing the assistance to help someone realize what is being done and why that is needed. Everybody makes mistakes, and I frequently encounter orders with unrelated or unnecessary requests. This includes things such as the wrong appendage, the wrong site, the wrong sequence and even the wrong patient. Seeing how it was a lack of communication that placed Henrietta and her family in the situation it did, it behooves me to confirm with the patient and the ordering physician that what I am about to do is correct. In this way, I can avoid exposing anyone to unwarranted ionizing radiation. To improve upon the tenets of ethical behavior means that a commitment must be made to seeing them through. There are several ways I think this can be accomplished, though there are two that stand out to me. Using my active duty military service as a frame of reference, I know that one of the ways appropriate behavior is encouraged is by creating and enforcing standards. Organizations like The Joint Commission are a great resource for helping to set rules and regulations, while providing accreditation as a symbolic gesture that those goals are being met. It requires constant input throughout an entire system, and establishes the ethical road-map employees must follow lest they face discipline. The second example, and the one I truly find to be the most important, is to manifest personal accountability. To foster ethical behavior in others means to enforce it in yourself. I'm of the opinion that this requires a time investment. Having this personal accountability allows you to take a moment and think through the sequence of your actions, to examine where those actions might lead a patient. Lastly, this accountability also means you should be willing to report instances of ethical deviations, even if they are the result of your own actions or those you're close with. As people witness you holding yourself to that same standard, it becomes easier to make those behaviors commonplace up and down the chain of the organization. All in all, I think this book accomplished its goal. It made me aware of just how easy it can be to act in an unethical manner. It placed a great emphasis on the woman behind the story, her family, and the journey they had to take to understand how truly important their mother was. Perhaps most important of all, the book made me question my own set of ethics and the motivations for doing so. If the best thing Henrietta’s story can do is to generate a conversation on the topic on ethical values, I would say it more than served its purpose as the catalyst for that event.
