The Legacy of HeLa in the Lacks Family

Deborah Lacks

After reading The Immortal Life of Henrietta Lacks, I have many mixed feelings about Henrietta’s daughter Deborah’s view on the question of ethics. It is evident throughout the book that Deborah has many issues with what happened to her mother and to her mother’s cells. Before Rebecca Skloot began writing her book, she wanted to get in contact with the Lacks family in order to larnthe story of Henrietta and her family’s history. Skloot contacted a man named Patillo who gave her the contact information for the Lacks family. This is the first time that Deborah’s attitude about her mnother’s situation is presented. When the doctor gave Skloot the information to call Deborah, he told her to be very kind and patient with the Lacks family because Deborah had previously had a stroke due to the stress of trying to deal with reporters asking about HeLa cells. When Skloot first contacts Deborah, she is very excited about Skloot writing a book on her mother’s life. In the phone call, Deborah mentions that she “didn’t think it was fit for him to steal my mother’s medical records and autopsy papers.” It is not clear to Skloot who Deborah is talking about but she is clearly upset with what happened.

Further into the book you learn more about Deborah’s feelings towards the HeLa cell situation. Deborah talks to Skloot about how she thinks that it is wrong of the scientists to not give her mother credit. “Since they go ahead and taken her cells and they been so important for science, Deborah thought, least they can do is give her credit for it. (p 197) Most importantly, Deborah is very upset with what is happening to her mother’s cells in research. She mentionsthat when she heard about her mother’s cells in certain experiments and tests and learned about what her mother’s cells were going through, she felt a great sense of confusion. The doctors never bothered to explain to any of the family members what was really happening with the cells. For example, when they crossed HeLa cells with a tobacco plant, Deborah thought that there was a human-plant that was half her mother and half tobacco. These thoughts and ideas greatly disturbed Deborah, especially when she learned about the cells being used to experiment with viruses such as AIDs and Ebola. “Deborah imagined her mother eternally suffering the symptoms of each disease: bone-crushing pain, bleeding eyes, suffocation.” (p 196) Thoughts like these haunted Deborah.

Skloot’s role in Deborah’s life can be interpreted in many ways. From reading the book, I concluded her role was that of a helper. Before Skloot contacted Deborah, she did not know much about her mother’s cells at all. But Skloot tried to help Deborah  understand much of what had happened. I believe that, in the end, Skloot helped Deborah find peace with what happened and Deborah was therefore able to let go of some of her worry and stress.

Day Lacks

Day was Henrietta Lacks’ husband and therefore knew the most about what was going on with her body after her death. But even he did not know anything about his wife’s immortal cancer cells that had become famous around the world. He quickly became bitter about all the publicity that Henrietta’s cells attracted, forcing him to deal with insensitive reporters. Day never felt any compassion from these people nor any compensation for his time nor sufficient explanations as to what Henrietta’s cells really did and why they lived on for years and years. These journalists were simply looking for a story and seemed to have little respect for the family’s feelings. When Day met Rebecca, he simply repeated the same story he had told hundreds of reporters who had called asking about Henrietta’s miraculous cells; he did not know that she really cared about their family and about Henrietta’s life, not just about her contributions to science. The idea that the reporters didn’t see Henrietta’s humanity advances Skloot’s argument that Henrietta’s humanity had been lost in the development of the HeLa cells and in the research conducted with those cells. Day said that at first he didn’t give permission for the doctors to do an autopsy, but he eventually decided that it couldn’t hurt. But he gave permission only for an autopsy, he said; he didn’t tell the doctors that they could test Henrietta’s cells, keeping “her” alive for years and years after her death. All Day was told was that if he consented, the doctors could prevent his children and grandchildren from getting the same cancer.  The doctors did not tell him what was actually done with Henrietta’s cells, although Day said that they knew that her cells were growing when they talked to him. Day became suspicious of doctors after Henrietta’s death, and he believed that Hopkins experimented on Henrietta because she was black. Day never understood why Henrietta’s cells stayed alive because no one ever bothered to tell him; like the rest of the family, Day heard  about his wife’s cells did through hearsay, not directly. Because of an illness, Day never got to see Henrietta’s cells even though he wanted to, but Rebecca Skloot taught the family the most anyone ever had about Henrietta’s immortal cells. She brought the humanity back to HeLa and put a face to a forgotten name. If the doctors had told Day about what he was giving consent to or what Henrietta’s cells had the potential to do for mankind, most likely he would have gladly given his permission. But what Day said the doctors did advanced Skloot’s argument that Henrietta’s family should have been told what was happening from the start, and when the cells became a multimillion dollar commodity they should have gotten a cut of the money, just as Day, Sonny, and Bobbette said. Henrietta should have been treated as a person with a family, and the family as people who had just lost a wife or mother. Instead they were forgotten, just as Henrietta’s name was. Skloot shows that the doctors and scientists got so caught up in science and money that they forgot about the ones who matter — the people.

Zakariyya Bari Abdul Rahman

The psychological topic of Nature vs. Nurture offers a convenient means of framing debates about the causes for human behavior. Do we act the way we do based on our genes or because of the environment we grew up in? This theme fits in perfectly with the book The Immortal Life of Henrietta Lacks, particularly when we consider the complex and troubled character of Zakariyya Bari Abdul Rahman. Through this book, Rebecca Sklootallows us to view both sides of Zakariyya’s character in relation to Nature vs. Nurture. Although Skloot does not explicitly state what  causes Zakariyya’s  psychological and emotional struggles, she does however allude to the fact that nothing in his life can be easily dissected as black and white.

Joe Lacks, who later changed his name to Zakariyya, was the fifth and last child of Henrietta Lacks. Before he was even born, he already had drama surrounding him. When Henrietta, who later died of cervical cancer with a mix of other illnesses, was carrying Joe in her womb, she began to complain of pains in her stomach. Henrietta and her family never for a second doubted that the pain she was experiencing was unrelated to her baby Joe.

When only a year old Joe was diagnosed with tuberculosis and spent much of his second year in the hospital by himself. Eventually he was tossed from family member to family member. But unfortunately for Joe, his early childhood illness was just the beginning of a tumultuous life to come. After being thrown from family to family, Joe and his siblings went to live with Galen and his pernicious wife Ethel. Ethel mentally, verbally, and physically abused all of the children, but for some reason Joe always got the punishment ten times worse than his siblings. Ethel would beat Joe with belts and throw chairs at him for no reason at all. She would beat him even when he was lying in the bed or even just sitting in a chair. She would make him stand by himself in the basement on one foot in a corner as well and would beat him even more if she ever saw him put his other foot down. This unrelenting torture was sure to add to Joe’s  psychological and emotional frailty. After that, Joe grew up a mean and belligerent man. He was always fighting and hated cooperating with others. He spent most of his adult life in isolation, even while serving in the military, and later he was placed in solitary confinement in prison.

So what is to blame for Joe’s illness? Was he predisposed while in the womb of Henrietta or was it his abusive upbringing? As Skloot described it, “Joe grew into the meanest, angriest child any Lacks had ever known, and the family started saying something must have happened to his brain while he was growing inside of Henrietta alongside that cancer.” (p.114) It’s clear that the combination of both may be to blame, but the absence of his mother and the abuse and neglect he endured at the hands of his relatives clearly exacerbated any emotional or mental insufficiencies that Joe may have had.

Elsie Lacks

Elsie and Henrietta’s stories have many similarities, and Skloot uses Elsie’s story to further her point about how inherently susceptible the poor, black, and defenseless are to being taken advantage of for inhumane research and treatment by doctors and scientists who often believe themselves to be working for the greater good.  People who fall into one of those categories are readily preyed upon and are easy targets for disreputable research. People who are poor tend not to have the education or the means to defend themselves or to even be aware that they are in threatening situations and are therefore easy targets for such experiments and procedures. Also, African Americans  were subjugated for so long in our culture that perhaps an attitude of powerlessness  remains, whereby black patients do not feel comfortable questioning the authority of a white doctor  or medical researcher. People who are ill are often too physically or psychologically weak to stick up for themselves or to question a professional figure or to realize that they are in a dangerous situation. Elsie’s story demonstrates all of these elements at work in the context of such a gruesome fate. Even though her story is not mentioned often in the book, it delivers a real blow to readers confronting the crushing reality of the horror that befell her. Elsie’s story is meant to resonate viscerally in the reader and perhaps instill a sense of despair and outrage that Deborah and Elsie and the rest of the Lacks family most certainly feel.

Those people who are powerless or weak  are most  susceptible to abuse. Skloot uses the syphilis study at Tuskegee on poor black men to demonstrate that the powerless are easily abused. What occurred there and in mental institutions was a gross breach of human dignity. The description of Elsie’s picture in the records from Crownsville does not seem to depict a person being treated for a medical condition. In fact, such a portrait doesn’t even sound human.  Her hair is matted; her “head is twisted unnaturally” (273). Skloot’s description of Elsie sounds like that of someone who is greatly disturbed, which is precisely what the Lacks family felt when they discovered the truth about Elsie, just as they’d felt disturbed when they learned certain details about Henrietta’s treatment and the donation of her cells for medical research. This is also what African Americans all over the country feel when they hear similar stories of the violation of the rights of their fellow African Americans.

More information:

About The Immortal Life of Henrietta Lacks

http://www.smithsonianmag.com/science-nature/Henrietta-Lacks-Immortal-Cells.html

http://www.npr.org/templates/story/story.php?storyId=123232331

http://www.google.com/search?q=Henrietta+Lacks&hl=en&client=safari&rls=en&prmd=i&tbs=tl:1&tbo=u&ei=zk-ETLiYIIH6lwfknoWyDg&sa=X&oi=timeline_result&ct=title&resnum=17&ved=0CGkQ5wIwEA

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