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Henrietta Lacks and Experiments without Consent

Updated October 3, 2021
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Henrietta Lacks and Experiments without Consent essay

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In the 1950’s at Johns Hopkins Hospital in Baltimore, a woman named Henrietta Lacks had her cancer cells harvested without her knowledge. Those cells became known as HeLa cells and aided in major medical breakthroughs like the polio vaccine. In the novel “The Immortal Life of Henrietta Lacks”, author Rebecca Skloot, attempts to trace the events of Henrietta’s life while assisting her uninformed children to find out what had happened to their mother and the scientific footprint she had left on the world. Along their journey, they discover the deception, unethical decisions, and discrimination hidden within the scientific community.

Due to several factors, both the social institutions and the primary characters are placed under many obstacles that they have to overcome using the different decision making processes.

Social Issues Present and Resolutions

Science social institutions experience many social issues for conducting unprincipled scientific research and inadequate treatments. The primary characters, the Lacks family, also experience personal and societal issues while trying to discover the truth about Henrietta.

Social institutions. It began with Johns Hopkins Hospital that was established to care for the poor, black community in Baltimore. However, impoverished black men and women seemed to be exploited for convenience or profit. There was a tale of “Night Doctors” circulating where black people were abducted by hospitals after sunset and used for research (Skloot, 2010, p.152). This led the black community to believe that Hopkins was built in a colored neighborhood to have research subjects, not to benefit the poor. This certainly was the case for Henriette Lacks whose cells were harvested and shared without her consent. Her family’s blood was also drawn without knowledge of what it was going to be used for.

But this was not uncommon. Her doctor, TeLinde, “often used patients from the public wards for research, usually without their knowledge” (Skloot, 2010, p.30). Hopkins was not the only institution to do this, a researcher at Sloan-Kettering Institute for Cancer Research Injected HeLa cells in patients at the hospital and prisoners at Ohio State Penitentiary, causing tumors, without asking their permission. (Skloot, 2010, p.128). At The Hospital for the Negro Insane where Elsie was held, experiments were conducted on the inmate’s brains without consent, and black patients were beaten by their white nurses (Skloot, 2010, p.275). The Tuskegee Syphilis Studies took advantage of the poor and uneducated by offering incentives without warning them about trial risks (Skloot, 2010, p.50).

This raised the ethical and social problems of whether hospitals should be able to conduct research on patients without their consent while shining light on their maltreatment towards colored and poor folk. Legally, there was no law binding scientific institutions to seek consent from patients, to preform research in the 1950’s, consent was only legally required for treatment. Racial segregation was also legal. Ethically, many people thought that something as personal as their body should not be taken without their knowledge, and in law suits filed by individuals like Moore, who experienced a similar scenario to Henrietta, would be ruled against by the judge (Skloot, 2010, p.198). Individuals were tortured for being black or poor. Thus, this led minority groups to have a strong distrust in medicine and society who were meant to protect them. (Moore & Asay, 2018)

Primary characters. The Lackses face many issues of maltreatment, poverty, and oppression. After Henriette’s passing, Day moved and started working to try and support the kids, however he was unable to and recruited help from Henrietta’s sister and her husband; they starved and worked the children. They also molested and abused Deborah and Joe causing severe mental and emotional tolls. Eventually Joe and older brother Lawrence got into illegal activities to make ends meet while Deborah married young to an abusive male. Socially, the Lackses were able to be deceived by researchers since they were impoverished and uneducated.

What put these characters at risk for this kind of treatment was their surroundings. Historically, racism was very prevalent in the 1950s due to Jim Crow laws; it stated that black and whites were to be separate but equal and it was enforced until 1965. This played a huge role in Henrietta’s treatment. Many people in Baltimore could not pay their medical bills, so doctors believed that they could secretly conduct research on patients in return for the free medical treatment they received. It was also, “shown that black patients were treated and hospitalized at later stages of their illnesses than white patients. And once hospitalized, they got fewer pain medications, and had higher mortality rates” (Skloot, 2010, p.64), similar to Henrietta.

Environmentally, the Lackses had little access to resources such as quality healthcare or education. Skloot describes the neighborhood that they grew up in as an urban wasteland where many were homeless. The home-house where they lived was, “a four-room log cabin that once served as slave quarters, with plank floors, gas lanterns, and water” (Skloot, 2010, p.18). Economically, poverty induced vulnerability to predatory behavior. It meant lack of adequate healthcare, affecting Henrietta, and education, something that Deborah would struggle with as she tried to understand what HeLa cells were and how her mother was “immortal.”

Social and cultural factors have an “enormous impact on identification, use, and production of both material and human resources” (Moore & Asay, 2018, p.13). Jim Crow laws claimed whites and blacks must be equal, but blacks and whites did not have equal standing or rights. Each race had their own bathroom, schools, and areas. Hopkins, being a charity hospital, and one of the few that would provide care to black patients, had a special colored ward wherethe white doctors dominated. Thus, Henrietta was unacknowledged in the media, and the family did not receive any information; they believed Henrietta was still alive in a lab held hostage.

The decision making process. The decision-making process includes, “recognizing existing needs, identifying alternatives to fulfill needs, evaluating identified alternatives, selecting and implementing alternatives, and reflecting on and evaluating the alternatives selected” (Moore & Asay, 2018, p.8). In the novel, the Lackses utilized these steps after Henrietta passed to determine what would happen with the family. Day realized he did not have the means to support the family, so he moved to find a job and gain access to resources. Then, he realized he was still unable to support them financially, and enlisted the help of family members. They took care of the children in a poor manner, so then Lawrence and Bobbette recognized the abuse, and took his siblings in so they could resolve the issue. Through management, “directing and controlling a large group of people for the purpose of harmonizing the group toward accomplishing a goal” (Moore & Asay, 2018, p.4), Bobbette and Lawrence were able to use their access and availability to basic, financial, and material resources to support his siblings.

With regards to the characters and the science social institutions, the decision making process was not used. The scientific community dominated while the Lackses were unaware of options. They followed more of a political model that, “produces outcomes that are related to the power of individuals” (Moore & Asay, 2018, p.8). The Lackses had little resources such as money and information available to them while the scientific community did, leading to Henriette’s inadequate treatment at Hopkins. This issue of them not knowing what had happened to Henrietta, Hela cells as a whole, and not being acknowledged socially or financially, would’ve been resolved if the decision making process was utilized, and social barriers like race, poverty, education were not prevalent. That way the researchers would see the Lackses as competent equals, and the Lackses would have had insight on what was going on medically.

Critical reflection. David Lacks, Henrietta’s husband also known as “Day,” played a crucial role. His infidelity created a rift between him and Henrietta, leaving her primarily caring for the children. If Day was given the opportunity to change, being a faithful, supportive husband, could’ve prolonged Henrietta’s life for she would not have contracted multiple venereal diseases. If Day was also a protective father, Deborah may have not experienced the sexual abuse to the extent she did. He willfully turned a blind eye to the abuse, “as day drove with his arm around Ethel in the front, Galen would grab Deborah in the backseat forcing his hands under her shirt, in her pants, between her legs” (Skloot, 2010, 113).

This greatly impacted Deborah later in life by her developing trust issues. It took Skloot a lot for Deborah to work with her, but even then Deborah constantly doubted her motives. Deborah would scream at Skloot if she believed Skloot was reading more of her mother’s medical history than she wanted. If Day was emotionally present, Joe would also not have been tied up in the basement and beaten which served as a precursor to his violence, leading him to murder Ivy and end up in prison. Joe’s actions are clear signs of childhood psychological damage. Elsie, was placed in a “negro insane” hospital for signs of “idiocy” and Day, her father, also said she was dumb. Abandonment was the abuse Elsie faced, and Lawrence’s job was to clean up Day’s mess (Skloot, 2010).

When Skloot meets Day at 84, he is filled with suspicion and resentment about Henrietta and the doctors who “killed” her. Day blames those around him for the outcomes in his life, instead of reflecting on what he could’ve done, been more present and protective towards his family. If Day was given the opportunity, being faithful to Henrietta and protecting his kids from trauma would’ve made a difference. Potentially his mental state in his eighties would improve as well by him having a trusting relationship with his children and being content with his life.

Henrietta Lacks and Experiments without Consent essay

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