Race, Medicine, & Society Notes - March 29, 2018

Race, Medicine, & Society Notes - March 29, 2018

The Immortal Life of Henrietta Lacks Part 2

Discussion Questions:

• In Chapter 21, Skloot writes that “today when people talk about the history of Hopkins’ relationship with the Black community, the story many of them hold up as the worst offense is that of Henrietta Lacks -- a black woman whose body, they say, was exploited by white physicians.” Do you agree that Henrietta was “exploited”? In what ways and to what extent? What factors facilitated and enabled that exploitation? How do you locate this exploitation within the larger trajectory of the intersecting histories of race and medicine in the US?
• What do you make of Skloot’s alternate narrative lines, shifting between historical use of HeLa cells by researchers and contemporary accounts of Henrietta’s family? To what degree, and in what ways, do those stories intersect in ways that reveal the power dynamics that surround race and medicine (that is, the biopolitics of this particular case). What do you make, for example, of Lawrence’s claim in Chapter 21 that “She’s the most important person in the world, and her family living in poverty. If our mother so important to science, why can’t we get health insurance?”

Useful pages in book 174,160

Theoretical Concept: Michel Foucault (French Philosopher)

Biopower - Power over the biological, Social Field of power and struggle

Biopolitics - Bodies and lives are also political, what we do with our bodies. Life determines the basis of politics. Politics regulates people’s lives

• Body processes regulated by politics (government, culture, social expectations)

Official / Sovereign - Can the State control your body?

• Minor’s don’t have say over their body until 18
• Regulation reproduction (abortion, access to Birth Control)
• What drugs people can legally have
• Requiring vaccination records
• Age limit on tattoos
• Access to public health spaces
• Death Penalty (Decision of life or death)
• Does State have to provide healthcare?

Institutional Power:

• Doctor’s providing assistance that’s illegal
• Religion (teachings on sexualtiy, nuns)
• Schools
• The right time to have children and the right number to have and what happens if you don’t have children
• Funeral Industry

Organ Donation:

• Social Pressure… why not do it?
• Seems like the moral choice

Other Theorists: Agamben, Mbembe

Social Construction of Race

Precarity - live or die at any moment but there’s factors that stack the odds

Discursive Formation - Ways that people's’ lives are shaped by what is told/stories/culture passing through society

What institutions affected Henrietta Lacks?

Doctors knew they were doing wrong, not reporting taking cells during Henrietta’s life, claimed to take cells after death

Does Henrietta’s race and economic status lead to her losing control over her body to the doctors

• Lacks family too poor to retaliate to doctors
• A white family would have the money to retaliate
• Education gap

Set in the timeframe of the exploitation of the black body

Why was the family included in the book?

• Brings reader closer to family and to feel for them
• Shows the suffering family endured (no benefits from Henrietta’s contribution)
• Makes the cells more like a person
• Book not as dry (book isn’t just historical facts)
• Primary and Secondary Source

Henrietta Lacks Part Two

After our class discussion on March 27th, I have been thinking more and more about the ethics behind the Henrietta Lacks situation. With that being said, I was pleased to see that the beginning of Part Two contained some content that would help me to decide whether or not I found this practice to be completely unethical. Prior to our last class discussion, I did not realize that there is actually no law that requires doctors to ask permission from a patient or their family prior to taking tissue from a living patient. Now that I know that, I, personally, do not feel that it’s right to say that the doctor that took Henrietta’s cells was being unethical in his practice. He did not break any laws, leaving the question of whether or not this was ethical up to each individual person’s opinion. If you chose to think that this was not ethical, then I feel as though you should be placing your blame on the medical profession as a whole, not on this one, specific doctor that was just doing his job. Skloot then goes on to say that there is a law stating that taking cells from a dead person without permission is illegal and that Henrietta’s husband gave permission for her cells to be taken and used. He was even told that they would be running tests on these cells and using them for experimentation. While I do see the annoyance of the doctor’s repeatedly asking his permission and how he could end up just giving in because he did not want them to continue to ask, he still agreed to this. 

It was also mentioned in class how little recognition Henrietta received over her life-changing cells, but judging by the way that her family speaks about her, I would be willing to bet that Henrietta would be thrilled at the fact that she was helping others and making a difference. While I still do not know much about her, I get the vibe that she also would much rather have had that one and a half billion dollars given to cancer research than received it herself. And maybe I am not being as sympathetic here as I should be, but these were her cells - not her family’s cells. I do see that they clearly went through pain because of what their mother went through, but so have so many other families of patients that died of terminal illnesses. 

The Immortal Life of Henrietta Lacks (Part 2)

Even after Henrietta Lacks was defeated by her cancer, her body was still placed in a “...’colored’ freezer” (Skloot 157). Although parts one and two of the book do not explicitly criticize doctors or scientists for treating Henrietta differently due to her skin color, there is enough historical evidence to conclude that her story is greatly influenced by the idea of race. Even after death, her body was not allowed to be placed near a white body. As soon as Doctors in Johns Hopkins Hospital learned of Henrietta’s death, they wanted to take samples from the rest of her body. The permission to perform an autopsy needed to be given by her husband who had to request that they do not damage Henrietta’s upper body so that she could be presented at her funeral. When one of Dr. Gey’s assistants saw Henrietta’s body on the autopsy table, she realized that she never came to terms with the fact that the cells that they had been working with “...came from a live woman” (Skloot 160). She had not come to this realization fully until noticing Henrietta’s chipped toenail polish. To Henrietta’s family, they had lost a loving relative, but to the scientists and doctors, great discoveries were about to be gained through the HeLa cells, and shortly after her death “...planning began for the HeLa factory” (Skloot 164). HeLa cells were distributed in mass quantities to study polio, and propel the growing field of virology. The cells were even used to replace “...laboratory animals to test whether new products and drugs caused cellular damage” (Skloot 180). No one ever wondered about the human whose cells were being used until “HeLa became a ‘general scientific property’” (Skloot 184). Henrietta's cells provided endless research for the science field and gained attention throughout the country. However, her children grew up hungry and abused in her absence. Not only were Henrietta's cells being used for new scientific breakthroughs without any compensation given to her family, but the cells were also being used for experiments that proved to be extremely controversial. HeLa cells were being injected into patients who were unaware that they were being given cancerous cells, and neither Henrietta or her family had given consent for this fate of her cells.

Henrietta Lacks part 2

Part Two of The Immortal Life of Henrietta Lacks, we learn both the fortunate and unfortunate outcomes of Henrietta's death. Her family did not speak of her, and the youngest children did not know much of anything about her. Henrietta's daughter, Deborah, was the most curious about who her mother was and what happened to her, but nobody would answer the questions she had. Day, Deborah's father, began dating Ethel, who abused her brothers and her. Joe was even sent to the hospital because of the intense beatings. Ethel's husband before Day began sexually abusing Deborah. Her father would go on to do nothing about it. Had Henrietta not fallen ill, leading to an early death, her children would have not been abused. Her identity was something of a mystery to scientists, but they yearned to know who the person was that provided these immortal cells. I feel sympathy for Henrietta's identity while reading this. Not only do the scientists using her cells lack the knowledge on who she is, but also her own family struggles to inform Skloot on the details of the person behind the name "Henrietta Lacks". Her cousin even mentions that her cells lived longer than her memory did. This echoes the frustration Bobbette feels when she states that nobody told their family anything, and so they went on struggling while Henrietta's cells were taken from her, without knowledge, and used for these medical research breakthroughs.

Reading this story humanizes Henrietta, and shows that her death had consequences for her children, all the while her cells were alive in laboratories across the nation. Those living cells led to breakthrough medical research, including the ability to prove the polio vaccine was safe and effective. My grandfather's brother worked on Dr. Salk's team in Pittsburgh. That makes a family member of mine a part of those who used Henrietta's cells. He is a part of those who gained from the use of those cells, while her family continued to struggle. The same cells that were taken from her living body, and the cells she did not know were going to be used. It puts into perspective the residual gains my family has probably made on account of that research, which also illustrates my privilege as a white, middle class American. 

Henrietta Lacks Part 2

In part two of Rebecca Skloot's The Immortal Life of Henrietta Lacks, the section that most stood out to me was the chapter on consent and morality. The main question that was asked from Chester Southam was, "What if Henrietta's cancer cells could infect the scientists working on them?" (Skloot, 127) Which led to Southam and Mandel injecting people with cancer cells without their consent. I believe that intentionally injecting people without their knowledge or consent is immoral. Consent is one of the most more important parts of ethics. Back when Henrietta had her cells stolen, the consent she gave was only for operational procedures, not taking the cells to culture and grow them. The book talks about the Jewish Chronic Disease Hospital were Mandel would use patients for injecting cancerous cells. However, there were three doctors that knew it was unethical to inject the patients without their consent, because it reminded them of the Nazi trials on Jewish prisoners. (Skloot, 130-131) Also, because Mandel was using people from the JCDH, a few of the patients were unable to give consent due to the diseases they had. Nonetheless, Mandel had these patients injected with cancer cells. It astonishes me how excited doctors were to inject people with cancer cells and other diseases without the patients consent. Today consent is the first thing that happens when an experiment happens. Whereas, in the early and middle 1990s, people were experimented on by doctors whenever the doctors could get their hands on a patient. Consent is important in ethics, and doctors like Southam and Mandel used people for the advantage of science, but forgot that the injected were humans not experiments.

Part 1: HeLa

When Doctors first took Henrietta's cells it was obviously an unjust action to begin with. Henrietta gave consent to the hospital to "perform any operative procedures and under any anaesthetic either local or general that they may deem necessary in the proper surgical care and treatment" Removing Henrietta's cells might have happened during the operation in order to further cancer research, but they were removed for TESTING and were used in general research, not research to benefit/heal Henrietta herself. To add fuel to the fire, after getting positive results in the testing Gey didn't trace the cells back and ask for Henrietta's consent to use them in order to further the research. Also, I believe that this was not done on a basis of race, many people knew that the cells were called "HeLa" but not many knew that they came from a black woman. If more white people knew that black cells were being inserted into their body there would be a definite uproar. In fact, that wouldn't have happened in the first place because the hospital was careful to label blood samples as "black". Similar to the Tuskegee incident, Gey and his fellow researchers didn't keep organized materials. Sure, their equipment was clean and they were careful about contamination and experimenting correctly, but the fact that they didn't inform any of the patients of the cell collecting and never contacted Henrietta seems fishy. In the book there's a quote by one of Gey's colleagues, "I'll never forget it," Aurelian said. "George told me he leaned over Henrietta's bed and said, 'Your cells will make you immortal.' He told Henrietta her cells would help save the lives of countless people, and she smiled. She told him she was glad her pain would come to some good for someone." Gey openly admitted to his colleague that he found Henrietta and informed her about her cells, so why didn't he acknowledge that and give her public credit for saving "the lives of countless people"? Perhaps to keep the money to himself and to keep the malpractice of the lack of consent a secret.

Race, Medicine, & Society Notes - March 27, 2018

Race, Medicine, & Society - March 27, 2018

Part 1 of The Immortal Life of Henrietta Lacks

Discussion Questions:

• What do we learn about Henrietta’s life and the world she grew up in and medicine in the moment?
• How much is this book about race and racialization?
• What do we think about Rebecca in the book? She makes herself a character in the book
• How do we think about this in relation to the Tuskegee study?
• Why is Henrietta’s family included in the book?

Medical care impacted by racist assumptions

-assumption of syphilis even though it was cancer

Challenges for minorities:

• Took longer to get care
• Got less medicine
• Treatment itself was worse
• Doctors not believing symptoms

Henrietta’s doctors radical shift of their diagnosis within
3 weeks (everything is fine to you have cancer and we can’t do much for you)
explains physicians’ distrust that colored patients will follow through with treatment

Henrietta might not have understood her sicknesses or the need for
medical care, meanwhile the doctor would think that she was lazy and
disrespecting the medical system. Lack of communication between physician and
patient and lack of explanation of illnesses for Henrietta

Maybe Henrietta was acting rebellious towards the doctors

Lacks family didn’t receive any benefits despite Henrietta’s cells being used in science and contributing profoundly

-ironic because family didn’t have the money to get medical care, meanwhile
Henrietta’s cells were making major contributions in the field of medicine

Denial of treatment because it would interfere with Henrietta’s mother role and ability to have children

Reproductive rights of black women managed by whites during 20th century

Two Main Issues:

Cells taken without consent

What the cells went on to do & family not rewarded

Economic Exploitation

Henrietta gave consent for cells to be used but never agreed to research & mass production

• Ties into level of education
• Consent mainly given for operation she needed for her cancer

Why is Henrietta’s family in the book?

Words:

Biopolitics - differences between groups (Examples: ratio of births and deaths,
rate of reproduction, fertility of a population) (Wiki - Biopolitics)

Biopower - having power over other bodies

The Immortal Life of Henrietta Lacks, Part I

        Part I of The Immortal Life of Henrietta Lacks illuminates many of the ethical and social problems within the healthcare system that Lacks and many like her faced. The fear of sterilization, especially for African-American women, was a concern of going to the hospital for treatment. The fears of forced sterilization were one of the reasons why Sadie, Henrietta’s cousin, “figured Henrietta kept [her sickness] a secret because she was afraid a doctor would take her womb and make her stop having children” (Skloot 35).

        Henrietta, as many other African-American women, unknowingly lost her reproductive ability. One paper on hysterectomy stated, 

The psychic effect of hysterectomy, especially on the young, is considerable, and it should not be done without a thorough understanding on the part of the patent [who is] entitled to a simple explanation of the facts [including] loss of the reproductive function....It is well to present the facts to such an individual and give her ample time to digest them....It is far better for her to make her own adjustment before the operation than to awaken from the anesthetic and find it a fait accompli. (Skloot 91) 

However, this is exactly what Henrietta was subsequenly made aware of—a loss of her reproductive functions. Although the hospital assumed that Henrietta was aware of the loss of her reproductive function due to treatment, Henrietta clearly remembered not being informed of the risks.

        Many of unethical procedures, like involuntary sterilization, likely arose from untruthful ideas about African-American inferiority—like the fictitious beliefs that African-American’s are more susceptible to diseases. When Henrietta journeyed to the hospital to get examined “[h]er local doctor took one look insider her, saw the lump, and figured it was a sore from syphilis” (Skloot 36). The immediate assumption of a syphilitic infection, although possibly sincere, was likely based on the invalid assumption of African-American’s predisposition to syphilis. These false suppositions consequently led to substandard care for African-American patients.

        Henrietta and other women, particularly African-American, not only faced discrimination but were also used for research purposes—typically without their consent. TeLinde, one of the doctors at Johns Hopkins, "began collecting samples from any woman who happened to walk into Hopkins with cervical cancer. Including Henrietta" (Skloot 63). Ironically, "After Henrietta checked into the hospital, a nurse drew blood and labeled the vial COLORED, then stored it the case Henrietta needed transfusions later" (Skloot 120). Once Henrietta's cells were determined to grow they never seemed to be labeled or intended to be used for cancer in African-American's only. All of a sudden color did not seem to matter—that is only if it benefited the, white, general public as well.

        George Gey, the man who ran the lab that grew Henrietta’s cells, according to records never “visited Henrietta in the hospital, or said anything to her about her cells” (Skloot 121). However, Gey told his college, Laure Aurelian, that “he leaned over Henrietta's bed and said, 'Your cells will make you immortal.' He told Henrietta her cells would help save the lives of countless people, and she smiled. She told him she was glad her pain would come to some good for someone" (Skloot 122). Gey’s failure to visit Henrietta further emphasizes the disregard that he had for the countless patients he, wrongfully, obtained samples from. Unfortunately, Gey and others like him had no regard for health of the patients but only cared about the cells that they unwillingly contributed.

Works Cited

Skloot, Rebecca. The Immortal Life of Henrietta Lacks. Large Print Press, 2011. 

Henrietta Lacks - Part One

After reading the prologue to this story, I was left with many questions, as I had never heard anything on Henrietta Lacks or her cells prior to this class. Something that absolutely baffled me was the fact that her family did not give consent for her cells to be used, yet they were taken and used regardless. This left me wondering how this could happen, did nobody care that the doctors were doing this since she was black? And how is this still going on when, clearly, the family is still not in support of this? Is it because they do not have the financial means to sue? Is it because there are now so many of her cells that it is impossible to stop at this point? 

Digging into the first couple chapters of the book, I was very intrigued by the different aspects of Henrietta's life. It left me with even more questions, however. For example, when we learned that Henrietta didn't go to her follow up doctor appointments because she felt uncomfortable walking into hospitals - is this another example of a race issue, similar to the ones we discussed before in class? Did she feel so uncomfortable partially because the doctors did not look like her? I was also very shocked at her marrying her cousins and the fact that she and her siblings were all divided out amongst family members. Keeping in mind that this is a completely different time frame, I question if this was still a unique situation or if giving up your children and marrying your cousin was a normal thing. 

Towards the end of Part One, I thought it was shocking the visuals readers were given. At the beginning of the book, it states that Henrietta was about five foot tall. Here, it tells us that she was originally 140 pounds, a healthy weight for her height. The book then states that her weight had dropped 40 pounds, but that her stomach had swelled, making her look 6 months pregnant. It goes on to describe her facial features, giving us more of a visual of just how much pain she was in.