The Advancement of Science over the Rights of Patients
Sam Donato
Since the dawn of the modern age of science, a desire for advancement and discovery of knowledge has helped to drive the field forward. As science has begun to de-code the mysteries of life, unprecedented events can initiate new questions of best practice, ethics, and communication. A standout example was the harvesting and use of the cancerous cells of Henrietta Lacks. This pivotal moment in the history of science stands out as one of the most important actions in the development of modern medicine and the understanding of the human cell, as well as one of the most important events in the argument for human ethics, and the proper and effective communication of science.
If one were to look at the events surrounding the harvesting, distribution and research of the cells of Henrietta Lacks purely from a technical scientific research point of view with no consideration of ethics, then I believe there is little conflict with the actions taken. The cells are without question some of if not the most important aspects leading to modern medicine and understandings of disease and cellular function. Just to name a few advancements, the cells of Henrietta Lacks have helped scientists build the field of cell culture, study the effects of zero gravity, study diseases like Leukemia and AIDs and have directly helped with the development of the polio vaccine.
When looking at the harvesting of Henrietta Lacks cells from Henrietta and her family's point of view, a strong argument could be built on the unethicality of the actions taken and the neglect of proper communication. The importance of the scientific discovery seemed to overshadow any level of respect and ethical behavior that could have or should have been offered to Henrietta and her family. Her cells opened the door to a new scientific frontier, but that should not have been used as justification to look at Henrietta as a subject rather than a human being.
The reality is that de-coupling these factors isn't an option. If George Gey had not requested the harvesting of Henrietta's cells these incredibly important advancements of science and medicine may have never been discovered, or at least significantly stunted and delayed. At the same time, if George Gey had never requested the harvesting of her cells, Henrietta's family may have been spared the hardship and trauma that the cells brought upon them. Which action — harvesting and distributing her cells, or not harvesting and distributing her cells — was more appropriate? To answer that question would be to assign a value to one action that supersedes the value of the other. I do not know of many properly qualified to be assigning value to such subjective matters that have such an intense impact on the whole of humanity.
The question of whether or not Henrietta's cells should have been harvested is a difficult question to answer. After learning her story and the outcomes from the decisions made, I am not sure I have a good answer. I believe what is most important is to discuss what happened and how we can learn from this as a scientific and non-scientific community. I believe the scientific community is at blame almost entirely for the events that transpired related to Henrietta Lacks. The responsibility in these types of situations needs to come from the party that is taking or has a vested interest, not necessarily the party that is donating. In the case of tissue samples and donations that would mean that scientists and organizations that benefit from the harvesting of biological tissue need to take responsibility to build systems that protect the subjects they are harvesting the samples from.
In the case of Henrietta Lacks these systems were not in place, nor did the scientists involved put forth the proper effort required to address these problems. Her cells were harvested without her knowledge or consent. They were then experimented on and once they were demonstrated to be important the scientific community increased their use and excitement of the cells, while Henrietta and her family were left in the dark. They were not properly communicated to on the importance or uniqueness of the cells. They were not provided recognition, compensation or even explanation. In fact, George Gey's lab pushed the Lacks family to allow them to take samples from Henrietta's dead body. An argument could be framed to claim that there would have been no consent requested if it hadn't been the law. Rebecca Skloot writes in The Immortal Life of Henrietta Lacks: "Though no code of ethics required, the law made it very clear that performing an autopsy or removing tissue from the dead without permission was illegal." There is a certain level of decency and basic respect of a person and their family that was lacking here. For the paramount discovery that shrouded these cells, the amount of effort required to succinctly and efficiently communicate this to the family was all but avoided. Whether intentional or not, this lack of communication continued across multiple scientists and for far too long.
This lack of communication I find one of the most important through-lines of this story. Along with the incredible level of injustice and mistreatment of medical patients of color, I found the neglect or inability to communicate one of the most impactful aspects of this story. This lack of communication during the treatment of Henrietta seemed to be an aspect of true neglect. A history of mistreatment of black medical patients supports the argument that her doctors, along with George Gey and his lab, simply did not care about the human who was suffering. Skloot writes about Henrietta's cancer earlier in its development: "In early June, Henrietta told her doctors several times that she thought the cancer was spreading, that she could feel it moving through her, but they found nothing wrong." This type of interaction happened repeatedly until the cancer had grown and it was too late to stop it. This type of non-communication between doctor and patient was common for the time. The 1950s were a time where doctors were all-knowing — "Doctors knew best, and most patients didn't question that." This however does not justify or excuse the lack of communication, especially from George Gey and the associated researchers working with Henrietta's cells.
Other than a microbiologist he worked with claiming Gey met her, there is no record or evidence of George Gey ever speaking with Henrietta. This is not to suggest that a researcher or doctor should be obligated to speak with or communicate directly with the donor of every sample. This would not be a feasible task, especially in the modern age. However, at the time the revelation that Henrietta's cells caused in the emerging field of cell culture was certainly reason enough to let this dying woman know how important her donation was — even though it was non-voluntary. Instead of putting forth the effort to do so, George Gey introduced new life into the field of cell culture while Henrietta Lacks died a painful death.
It is hard to argue that communication alone would have saved Henrietta's life. Even if her doctors had treated her with the top medical attention, she very well still may have died. This does not however excuse or justify the lack of communication and respect. Even after her death her family had to continue to endure the pain caused by her passing while never being spoken to as equals.
There are two levels of miscommunication present in the story of Henrietta Lacks. The first being a mistreatment of Henrietta and her family from the perspective of their inferiority. The second is an inability to understand the necessity or importance of communication. I see both as significant issues, while the first type may be more difficult to address as it quickly opens up to something much larger. Whether that be implicit bias against a group of people, or a self-ego that places the individual above those around them, influencing someone to change these behaviors is a long and consistent effort. The second type I see as easier to address. Many times, a scientist may desire to do right and treat people with respect and honesty, but simply fail to recognize moments that require more delicate communication, or a different type of communication than they are accustomed to. The interactions of Victor McKusick and his postdoctoral fellow Susan Hsu are examples of both of these types of miscommunication at play.
In 1973, after a meeting of researchers attempting to sort out a widespread HeLa cell line contamination issue, it was determined that fresh samples would need to be taken from direct Lacks relatives. Victor McKusick was very quick to note the perceived ease in this effort. As a physician at Hopkins, McKusick had access to their medical records and was able to find them very easily. He instructed his postdoctoral fellow Susan Hsu to get blood samples, saying "As soon as you get back to Baltimore, get this done." It seems quite clear that McKusick cared not about the individuals of the Lacks family, or what drawing blood from them might mean. He spent no time considering the potential trauma the actions could cause the family, or if they even wanted to provide blood. It was apparent that McKusick cared about one thing and that was the continuation of his research. He even said while speaking with Rebecca Skloot about the acquisition of informed consent: "I suspect there was no effort to explain anything in great detail" — indicating that there was no effort to break down the reasons why they wanted blood, but simply they wanted blood and they were going to take it.
Susan Hsu, who actually spoke with the Lacks family and took their blood, seemed to simply not recognize the need or the value in fully explaining what was going on. After her initial phone call with Day (Henrietta's husband), Day thought that Hsu was testing him and his children's blood to see if the cancer that killed Henrietta was present. This was not the case, but was never understood by Hsu or Day. Hsu had a thick accent and did not speak English as her native language. When speaking with Day she said: "We come to draw blood to HLA antigen, we do genetic marker profile because we can deduce a lot of Henrietta Lacks genotype from the children and the husband." This would be a difficult sentence for anyone without associated training in cell biology or genetics to fully understand. Hsu made no attempt to inquire whether the family understood her, or to explain it in greater detail. I don't believe Hsu was being malicious — in fact I think she was genuinely trying to help and do a good job. She even said to Skloot in an interview: "I think Mr. Lacks pretty much already knew that his wife made a contribution and is very aware of the value of HeLa cells." Hsu assumed this as it was common knowledge in her world of the sciences — without being told that was the case. Day never expressed this understanding to her. This is a clear example of her inability to see the value in explaining things in greater detail, or recognizing that Day was not a scientist and may not have fully understood what she told him.
This level of personal communication was not a part of Hsu's job. She was not expected to be able to read social situations and explain complex work in simpler, more digestible terms to non-scientists. There is no question that to ask this of a scientist is a lot, but I believe this should be a very important aspect of the work that scientists do. Holding a general level of expectation that a scientist will have the ability to communicate effectively with non-scientists in a way they can understand is absolutely appropriate — especially when the work involves taking any type of sample from another human. Taking the extra effort to ensure that individuals know and understand what is happening with their blood, or tissue, or their loved one's blood or tissue is a basic level of human respect and decency.
The story of Henrietta Lacks and the trauma that her family experienced cannot appropriately be boiled down to a single issue. There were many factors at play over many years, and communication was just one of these. But I believe, had there been better, more conscious and respectful efforts to communicate, some of the suffering that Henrietta and her family experienced could have been alleviated. When Rebecca Skloot initially reached out to the Lacks family, she was met with disdain, frustration, and anger. One of the first things any member of the Lacks family said to Skloot was that no one had ever told them anything about their mother's cells. The Lacks existed in a world of darkness — a world where reporters and scientists continuously tried to enter in order to gather information or material, but didn't explain in any great detail why they were there. This must have led to an inexpressible level of pain and trauma. The Lacks lost their mother and wife to a disease they did not understand, at the hands of medical professionals they did not trust. Then to be bombarded year after year by these same professionals clearly left the Lacks in a rightful state of mistrust and disappointment.
The sheer elation that Deborah (Henrietta's daughter) felt when the BBC finally caught onto the story of Henrietta and made a documentary in 1996 shows how important understanding and communication was to her. Given the opportunity to speak at a conference officially naming a Henrietta Lacks Day, Deborah said: "For years, it seem to be a dream. Not knowing what was going on all these years. Didn't know how to even talk about it. Can this about our mother be true? Not knowing who to go to for understanding. No one from the medical field took the time." Later, Deborah is given a tour of Christoph Lengauer's lab. On this tour, Christoph showed Deborah and her brother Zakariyya images of their mother's cells and explained in detail why they were so important. He explained what cancer was, and why Henrietta's cells were so unique. He explained how they were used in research and how they had saved so many lives. Christoph did this in 2001. Henrietta's cells were harvested in the 1950s. It should not have taken over 50 years for someone to communicate these things to the Lacks family.
Science communication is an incredibly important aspect of the sciences. The ability to properly and efficiently communicate complicated ideas and practices is what educates the general public on the importance of the work being completed. Where there is a breakdown of communication of science, we tend to see negative effects — a general mistrust of certain technologies, or a damnation of a topic because of mis-constructed ideas. The story of Henrietta Lacks, her cells, and her family is a strong example of science communication done very poorly. Henrietta was not educated or communicated to about her cells, and neither was her family. For nearly 50 years, while the world of medicine and cell culture moved forward at alarming rates, the Lacks family was left in the dark. While the polio vaccine was being developed, the Lacks family was told nothing. While novel experiments were conducted on Henrietta's cells to better understand our world and ourselves, the Lacks family was told nothing. This is an injustice that led to a great deal of pain, suffering, and mistrust. When they could have potentially mourned their loss with the beauty of knowing their mother's cells were making meaningful, important changes in the world and saving countless lives, instead they lived with anger and animosity toward the people and systems working with those cells.
This story provides the world an opportunity. Scientists spanning across disciplines should have the obligation and responsibility to put in effort communicating their work to the public — especially if that work directly impacts the lives of other humans. Henrietta Lacks paved the way for innovation in science and medicine. As a scientific community, it is critical that one of the innovations we take from her story is the importance and delicacy of proper and effective scientific communication.
- Butanis, B. (2017, April 11). The Importance of HeLa Cells. Retrieved December 06, 2020, from https://www.hopkinsmedicine.org/henriettalacks/importance-of-hela-cells.html.
- Skloot, R. (2011). Book Club kit: The immortal life of Henrietta Lacks. New York, NY: Broadway.