The book “Immortal Life of Henrietta Lacks”

The Immortal Life of Henrietta Lacks: A Story of Unethical Medical Development

The novel “Immortal Life of Henrietta Lacks” tells the story of a woman named Henrietta Lacks, whose cells were taken and used for serious medical development without her knowledge. Given the fact that her cells were one-of-a-kind, her physical health worsened and she died. Years later, her daughters, who were harmed by her death, learn about this incident and demand restitution. Rebecca Skloot, a young writer, investigates the matter and documents her journey of fact-finding and contact with the Lacks family in an entertaining nonfiction novel. Rebecca’s book project proposal is met by the different reaction from Deborah and her siblings, and this essay seeks to compare these reactions.

Contacting the Lacks Family and Initial Reactions

Rebecca Skloot, in a quest to contact the Lacks family meets Dr. Roland Pattillo who was at Morehouse School of Medicine at the time and knew the Lacks personally. The doctor is very hesitant in providing any information relating to Lacks family and so asked Rebecca several questions concerning mistreatment of African Americans. After receiving the answers he found worthy, he referred Rebecca to contact Deborah who was the daughter of Henrietta.

Initially, when Deborah received the first phone call from Rebecca, she was very excited and responded favorably when she learned that it was about her deceased mother (Skloot 55). Interestingly, the information she provided was very confusing to Rebecca. Deborah was only an infant when her mother died, and she had always wondered who her mother was. However, nobody ever gave her an important idea. “Your mother’s cells are still alive,” (Skloot 56) and Deborah was desperate to understand what it meant by part of her mother being alive. On the contrary, Deborah’s brothers did not think much about the cells. After several attempts to contact them, Rebecca finally got through to her brother Day who hangs up on her.

Differences in Reactions and Opinions within the Lacks Family

I think Deborah’s opinion differed from her brothers because she wanted to learn about her mother whom she never knew. Contrastingly, her brothers thought that their mother was dead and there was no need to talk about her. Deborah also wanted to understand how part of her mother was still alive even after her death, while her brothers did not care about the cell’s issue. Deborah was hesitant to provide any information when Rebecca contacted her for the second time. Instead, she told Rebecca to “gain the confidence of men.” Deborah’s attitude changed over time because her brothers had convinced her that people were conducting business with containers that contained their mother’s cells.

Deserving Compensation for the Lacks Family

I believe that Henrietta’s family deserves compensation for the HeLa cells. The National Institute of Health (NIH) promised an overdue recognition to the Lacks family in any papers that may be related to science inventions (Skloot 192). On the other hand, the journalists made the genetic information public exposing Lacks family into the real world hence giving them a public recognition. Johns Hopkins hospital that dealt with cervical cancer repeatedly removed HeLa cells from Henrietta’s body without any member of the family’s consent. Johns Hopkins developed to be a multibillion-dollar biotech company but did not offer any compensation to the Lacks family. Instead, they only made the family be recognized as the rightful owners of the cells. The book by Rebecca Skloot, “The Immortal Life of Henrietta Lacks” also gave a public recognition to the Lacks family and their future generations (Skloot 196).

Suggested Compensation and Ethical Considerations

The Lacks family should at the very least be compensated with a health insurance that covers the whole family, especially from Johns Hopkins. A family member played a huge role in scientific inventions of vaccines, Vitro Fertilizations, and cancer treatment. Therefore, an enormous compensation besides recognition is necessary. Considering that the family has a religious background, I would find it hypocritical if they were solemnly interested in money. It would be unethical for them to go to every organization and family member who profited from HeLa cells just to get paid even if they deserved the payment. In my opinion, I would have preferred a settlement just to act as a token of appreciation besides other benefits like recognition and fame.

Ethics of Biological Samples and Patient Consent

Biological samples are retrieved and stored for varied reasons. It might be for clinical treatment, blood donation, for research purposes and therapeutic reasons. The fate of biological samples depends on specifications given by a researcher to a concerned individual whose consent is inevitable (Devine 06). Patients have rights to demand payment for their tissue organs. The fact that patients have full ownership of their tissues indicates that taking those without a person’s consent is considered stealing.

This case is familiar in some aspects to the case of John Moore, whose spleen was removed by researchers to aid in his leukemia treatment and like Henrietta’s cells realized that there was an enormous financial and scientific potential in his patient’s cancerous cells. It was outrageous when the doctor established a cell line on the lymphocytes that he extracted, patented the cell line and spent much money to license it. The doctor collected tissues and blood samples from Moore on his frequent visits and conducting more research on them. On the other hand, he told Moore that he was using them for testing that could help in his leukemia treatment (Devine 11) which was devious and misleading. The same mindset could be argued to be the one Henrietta’s doctors possessed.

When Moore came to find out the truth, he decided to sue his doctor because he was also interested in the share of the profits. However, his suit was rejected by the Supreme Court of California because Moore had no property interest in the cell line that his doctor established. The court explained to Moore that his rights to privacy were strongly governed by the article of informed consent. The court also illustrated that there are laws that prevent patients from obtaining their organs once removed from their bodies. The court cautioned Moore that he should have realized his doctor’s motives earlier. Patients should have the right to dictate the future purpose of their organs, and this can be legitimized through some bureaucracy and agreement signing. Doctors should also have some sense of humanity and seek for patient consent concerning their organs.

Ethics Regarding Henrietta Lacks and Ownership of Cells

I think it was right for Johns Hopkins Hospital to take Henrietta’s cancer cells. It is appropriate to take cells from a biopsy for purposes of conducting a private research that will help other people but not for a personal vendetta although personal information of the patient should have been kept private. It was unethical to retrieve more cells from the corpse without the family’s consent. According to the HIPAA Act of 1996, a patient’s consent is required when his or her information is disclosed for health care operations, treatment and profit gain regarding payment. HIPAA Act of 1996 also illustrates that authorization is required for a client or a client’s family on matters related to disclosure of client-protected information for payment, treatment and health reasons.

Patenting and Ownership of Living Organisms

Ananda Mohan Chakrabarty was a scientist born in India who developed a multi-plasmid Pseudomonas and later patented it. It was a new invention in the history of humanity that a living organism could be patented. The discussion on patenting genetically engineered organisms led to a decision by the supreme court that “a genetically-engineered organism is patentable under the subject matter {tittle 35 U.S.C} 101. An individual’s micro-organism composes of matter within a specified statute.” The development of an oil-eating bacteria sparked a heated debate on patentability and ownership of living organisms. In my opinion, biological materials should not be sold or patentable because they are research material which might cause dangerous effects to human health if misused or mishandled. George Gey from Hopkins gave out HeLa cells for free, but other scientists from biotech companies decided to make a profit from the cells which were unethical. I agree that when tissue and cell owners start getting paid, there will be obstruction and hindrance in further research by a scientist. The finance that should be used to further the research will instead be going to tissue owners’ pockets as they will frequently demand payment.

Mistreatment of the Lacks Family and Lessons Learned

Wiesel’s idea at the beginning of the story shows that every human being on earth has more than one side of him or her than what people would expect. It is part of the reason why when people are treated as a single-dimensional character, problems occur hence it is a perspective that contradicts with the inherent nature of an individual. Wiesel’s idea also proves that at the end of the story in “The Immortal Life of Henrietta Lacks,” the scientific society and the media are guilty of mistreating Lacks family except for Rebecca Skloot who was respectful to the family.

Ethics in Medical Experimentation and Research

The Guatemalan STD study was a syphilis medical experiment on African Americans in 1947. Irradiation of Black Cancer Patients was also a medical research on African Americans from 1960 to 1971. Slave Experiments were done in the period of 1845 and 1849 on female African American slaves. The best way to ensure that ethical codes are followed is to train people on the meaning of the code using real-life experience.

Works cited

Devine, Claire. Tissue Rights and Ownership: Is a Cell line a Research Tool or a Person? P.1-18, 2010. Retrieved on 31st March 2017 from

https://www.stlr.org/2010/03/09/tissue-rights-and-ownership-is-a-cell-line-a-research-tool-or-a-person/

Skloot, Rebecca. The Immortal Life of Henrietta Lacks. Crown Publishing Group, 2010.