In the book, The immortal Life of Henrietta Lacks, Rebecca Skloot tells the riveting story of Henrietta Lacks, a cancer patient who had cells cut from her cervix without her or her family’s knowledge. The doctor responsible for this medical procedure, continued to use her cells for scientific experimentation. Skloot explains how the HeLa cells have “helped with some of the most important advances in medicine: the polio vaccine, chemotherapy, cloning, gene mapping, in vitro fertilization.” (Skloot 2010: 2) The studies and court decisions around HeLa cells also have evolved the policies in regards to patients’ rights to medical consent. I often was amazed as Skloot’s storytelling ability to bring the story to life as it easily could have been dry filled with research and studies. What I found to be most interesting was the impact of HeLa cells on medical research and treatment. The moral dilemma of scientists using HeLa cells for profit while the Lacks family received no compensation urged me to learn more about modern policies. Cootie, Henrietta’s cousin, sums up this dilemma perfectly in this quote. “You know other countries be buying her for twenty-five dollars, sometimes fifty? Her family didn’t get no money out of it.” (Skloot 2010: 81) I learned how great poverty can affect a family. For the Lacks family, they had to leave school early to help support their family. This helped me gain a greater understanding of how impoverished communities are stuck in a vicious cycle of being poor. What surprised me the most was the Lacks family negligence of Skloot initial attempt to interview them. If I were the Lacks, I would want to get my story out there in hopes of compensation. This book focuses on uncovering the history of HeLa, and understanding what the cells are and their impact.
This is a story with many layers. What are the different story lines in this book? Starting out at the beginning, Henrietta is drawn into a tragedy. Henrietta checks into John Hopkins in 1951 for a painful “knot on her womb”. She quickly gets diagnosed with cervical cancer. Her doctor takes some of her tissue from her cervix and gives a sample to Gregory Gey, the man in charge of the research. Henrietta later dies but her “immortal” cells are sent to labs across the world. The next storyline is the quest for answers. The death of Henrietta leaves her five children to be raised by David “Day” Lacks, Henrietta’s husband, and his cousins. They were extremely abusive to the kids, beating and molesting them. While all of this going on, the cells are being used for medical research making millions of dollars in profit. The Lacks are unaware of any of this, until an employee who works for the National Cancer institute informs a family member. The Lacks family feels betrayed and get very angry. The last storyline is the resolution. Henrietta’s daughter Deborah leads their family into the fight for justice and recognition they deserve. The Lacks family did not receive any money from the HeLa cells but their efforts did lead to important changes in policies to patient rights and consent. The family is content knowing the importance HeLa cells have on medical research.
Rather than using a chronological approach to this story, Skloot tells Henrietta’s story
within a framework of three distinct themes and sections of the book. Discuss the
significance of each theme and the titles she used to delineate each. How would this
story have been different had she told it chronologically? In the first section of the book “Life”, Skloot recounts all of the unethical practices George Gey used. Skloot used the title “Life” because Henrietta was still alive when Gey successfully cultured the first immortal human cell using HeLa. Later in the section, you learn about her background and struggles. In the second section titled “Death”, Skloot informs the readers that Gey learned that Henrietta had died. Gey wanted to extract more cells from other organs. The title “Death” comes from the advancement of the HeLa cells post death. The third section titled “Immorality”, the Lacks family first discover what the HeLa cells are. The section is titled “Immorality”, because the Lacks understanding of the cells and why they are called immortal. The cells are, if all combined, said to weigh over 50 million metric tons. The story would have been boring if Skloot told it chronologically. It would have been a story about biology. She was able to capture the reader’s attention by being able to add emotion and twists by using narration with flashbacks.
As a journalist, Skloot’s intent in this story was to remain neutral. Do you think she
achieved this? Give examples to support your position. Skloot states “This is a work of nonfiction. No names have been changed, no characters invented, no events fabricated.” (Skloot 2010: xiii) Skloot based everything off of facts and interviews. Skloot conducted “more than a thousand hours of interviews with family and friends” (Skloot 2010: xiii). I believe that Skloot did remain neutral and was careful to present the different sides. I also believe that the Lacks family felt anger towards white people for the way they treated Henrietta. This could have been a barrier for Skloot to surmount the racial divide.
We bring our own opinions and experiences to how we read and understand a story. In
this story, on which side do you find yourself most sympathetic? Why? The sides of the story are Lacks family or science. I can definitely see both sides of the issue but if I had to choose a side I would be more sympathetic towards the Lacks family. Henrietta was taken advantage of and used as a lab rat. I don’t think that financially compensating the family would solve the issue. Skloot provides an answer to her side “How you should feel about all this isn’t obvious.” It seems as if she falls on the side of what’s part of your body, is clearly yours.
What part does race and gender play in your understanding of what happened in this
story? Throughout the story, Skloot shows us that racism was prevalent. An example of institutionalized racism was when “David drove Henrietta nearly twenty miles to get to Hopkins, not because they preferred it, but because it was the only major hospital for miles that treated black patients. This was the era of Jim Crow—when black people showed up at white-only hospitals, the staff was likely to send them away, even it if meant they might die in the parking lot.” (Skloot 2010: 15) I believe that her race had a huge impact on how she was treated. For I am not African American, I can never understand the effects of racism now and definitely not in 1951. It was hard for me to put myself in the shoes of Henrietta because I rarely get discriminated against. Skloot painted a clear picture and I was able to understand for the majority.
How do race and gender influence health care today, both in terms of how patients are
treated and access to health care? I would like to say that race and gender play no factor in terms of how patients are treated and access to healthcare. In a study by, US National Library of Medicine, “Trivedi and Ayanian, conducted a cross-sectional analysis of 54,968 respondents to the 2001 California Health Interview Survey to assess the relationship between perceptions of health care discrimination and use of health services.” The study reported that 5% of respondents experienced some form of discrimination. Based on this study, it is clear that discrimination is still alive somewhat in health care.
What are the ethical issues underlying this story? How does the era in which this story
took place influence how we think about these ethical issues? Skloot writes about the Tuskegee syphilis experiments “They recruited hundreds of African-American men with syphilis, then watched them die slow, painful, and preventable deaths, even after they realized penicillin could cure them (Skloot 2010: 50). This is clear ethical dilemma of racism. Another ethical issue is integrity. The doctors and scientists negligence to inform any of the Lacks of what they have done is a clear ethical issue. The era the story took place was during the Jim Crow laws. We grew up in an era where segregation is illegal. We can study that era all we want but it will never give us the full experience of living through that era.
Should scientists/physicians in the 1950s be held accountable to contemporary standards
of practice? Why or why not? Absolutely not. Scientists/physicians operated within the law at that time. I do not think its ethical or lawful to hold those scientists to our standards. Although I do believe what they did was wrong, I don’t think holding them accountable to modern standards is the right thing to do. They should not be punished nor praised for their wrong doings and accomplishments.