An Interview with Megan Ritchie:
What inspired me to write the paper is how the book told the story behind the cells, the actual story of the Lacks family. In science, you hear about discoveries or breakthroughs, but you rarely hear the back stories of what went into them. Learning about Henrietta and Deborah made me see how the human side was connected to the science side. For instance, the scene where Dr. Gay's assistant saw Henrietta's red toenails poking out from under the sheet when she was in the morgue and realized their work collecting cells was not "pure science" but was built on a human story. It makes me wonder about the human stories behind all of our scientific advances. Are they like this one? Surely there are other people who have been forgotten about, who have been taken advantage of, whose legacies are confused and mistaken. In addition, there is a racial component in this injustice to the Lacks family, and the book does a good job depicting the history of the poor black community the Lacks lived in, how it was during the 1950s with the segregated hospital wards, and the offhand way blacks were treated. I was particularly shocked at the way that Henrietta's daughter Elsie was institutionalized in a mental hospital for blacks and then forgotten about. The way Skloot and Deborah dug into the hospital records to find Elsie again was powerful, and finding out about how scientists used those mentally ill people for experimental research was hard to accept.
One thing I took away from the book was how unnecessarily hard things were made for the Lacks family. From the moment when the cells were taken, until 50 years later when the author got Deborah to trust her (which was pretty amazing), everyone kept the Lacks in the dark, even lying to them. It took Skloot several years and careful perseverance to get the story straightened out for them. She really did an amazing job uncovering all this, and I hope she writes another book like it. I think she could do a similar book on the Tuskegee Institute's syphilis experiments.
Now that I am in college, I mostly read journal articles, but I have always liked science magazines like National Geographic, so that is good. I don't care to read online, so I usually print out the PDFs my professors send me so I can highlight them and write notes on them. I like writing and am interested in social justice, so the book and the essay contest were a great fit for me. I really liked Dr. Christoph Lengauer in the story because he was one of the first scientist who seemed to care about the Lacks as people and gave Deborah a color print of her mother's DNA slide. That gave a human touch to the whole thing.
winning essay by Megan Ritchie
It is an old saying that ignorance is bliss. I believe, however, that Rebecca Skloot's novel, The Immortal Life of Henrietta Lacks is a perfect example of why ignorance is not bliss. To me, the doctors' biggest crime in Henrietta's story was not taking her cells without permission. Should they have done it? Of course not. 60 years ago, however, what they did was not as morally heinous as it would be today. 60 years ago, taking a sample of someone's cancer cells for research seemed like a routine operation in a time where medical advancements were becoming more exciting than ever, according to Skloot's novel. This doesn't excuse what the scientists did in any way. I believe their biggest crime, however, was their complete disregard for the Lacks family, and their failure to fully explain the situation to them. Whether it was because they were poor, because they were black, because they were uneducated, or simply because the doctors felt like HeLa cells would never make it out of the lab, the doctors did not bother to explain what was happening to Henrietta's family, and that, in my opinion, was where the trouble lay.
I think much of the drama and anxiety in the Lacks family could have been avoided had someone sat down with them and explained, clearly and simply, what had happened with Henrietta's cells, and what scientists were doing with them. It didn't seem like Henrietta's children had a huge issue with the fact that the doctors were experimenting on her cells-some of her sons were angry that they weren't being financially compensated for the sale of HeLa cells, but what angered, upset, and hurt them the most was their ignorance of the situation. All they knew was what they learned from strange white scientists and journalists who would incessantly try to contact them-that a part of their mother had been taken from her and was being grown all over the world. Most scientists they talked to (with one exception much later, during the time that Skloot's novel was being written) gave them a vague explanation of what was happening, deciding not to give the family the dignity and respect to fully tell them exactly what HeLa cells were or how they were being used. Addionally, one scientist that Henrietta's daughter Deborah met with did the opposite-instead of explaining the HeLa story in terms that Deborah would understand, he gave her a complicated book about cells, patted her on the back, and sent her home. Try as she might, Deborah couldn't understand a word of the scientific language. Even when scientists actually used the Lacks family for further research, they still weren't clear with what they were doing. Some of Henrietta's children thought they were being tested for Henrietta's cancer, some thought they were actually being infected with it. Deborah always lived in fear that she would get her mother's cancer when she was 30, because that was the age Henrietta had gotten it. This lack of understanding about the basic mechanisms of cancer is just one example of the Lacks' ignorance on the subject.
When HeLa became famous enough to reach the press, the Lacks' (especially Deborah's) confusion just got worse. With sensationalized headlines about a "Mouse Man" or "HeLa Clones," it was perfectly understandable that the uneducated Deborah would start drawing some grotesque, science fiction-story conclusions. Whether it was caused purely by her ignorance on the subject or her anxiety problems that the HeLa situation led to (or a combination of both), there was a point in the novel where Deborah actually thought there were thousands of clones of her mother walking around all over the world. The crazy stories, conflicting explanations, chaos, and confusion caused rifts and unnecessary drama in the Lacks family, severe anxiety, hysteria, and isolation for Deborah, and added resentment of white people (especially doctors) for the rest of the family.
The HeLa cells were not the only situation in Henrietta's story that caused harm to the family because of their ignorance. Before Henrietta got sick, she had to send her daughter, Elsie, to a black mental hospital as a young girl. Elsie was epileptic and had some form of mental retardation, and with all of Henrietta's work and other children, she jut couldn't take care of her oldest daughter. Unfortunately, Elsie didn't go to what we would call a mental hospital today. She went to The Hospital for the Negro Insane, and even between the titles, there is a big difference. Besides the revolting conditions, where the patients lived in tiny, filthy cells, crammed on top of each other, the patients were subject to horrific experiments. There was evidence that Elsie had the fluid withdrawn from her brain so that the researchers could take better x-rays of it, and a hole drilled into her skull so her brain could be prodded. She died when she was 15, officially because of illness, but what the researchers did to her couldn't have helped. Unfortunately, Deborah only found all of this out about 50 years later, with the help of Skloot. The Lackses had no idea of the true terrors that Elsie was going through. They hadn't known any better, and just listened to the doctors when they told them to end her away. Like in the case of HeLa, if the doctors had been honest with the Lackses, they would have been spared a world of problems, and maybe even a life.
The moment I realized that the true problem in Henrietta's story was the family's ignorance was the moment that Dr. Christoph Lengauer (the one doctor who fully explained what was happening to the Lackses) gave Deborah a colorful picture of HeLa chromosomes. The fact that it meant so much to the family to finally see with their own eyes what all the fuss was about really showed me that all they truly needed was an explanation and insight. When the family was finally given the respect and the knowledge they deserved, they were that much closer to coming to peace with HeLa.