Deborah and her brothers’ attitude about the book project: Book Review

Dr. Roland Patillo and Rebecca Skloot

Dr. Roland Patillo, who was at Morehouse School of Medicine at the time, was contacted by Rebecca Skloot who wanted to contact the Lacks family. Dr. Roland is hesitant to provide any information about the Lacks family and instead asks Rebecca a series of questions about African-American mistreatment. After receiving the information he required, he directed Rebecca to Deborah, Henrietta's daughter.

Deborah's Discovery

Deborah was initially ecstatic when she received the first phone call from Rebecca and was pleased to learn that it was about her deceased mother (Skloot, chpt6, p08). Rebecca found the information she provided to be quite perplexing. Deborah was only an infant when her mother died, and she had always wondered who her mother was, but nobody ever gave her an important idea. “Your mother’s cells are still alive,” Deborah was desperate to understand what it meant by part of her mother being alive (Skloot, chpt6, p09). On the contrary, Deborah’s brothers didn’t think much about the cells and several attempts to contact them, Rebecca finally got through to her brother Day who hangs up on her.

Different Perspectives

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. I think Deborah also wanted to understand how part of her mother was still alive even after her death. Contrastingly, her brothers did not care about the cells issue. Deborah was hesitant to provide any information when she was contacted by Rebecca for the second time and instead she told Rebecca to “gain the confidence of men.” I think 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.

Family Compensation for HeLa Cells

I believe that Henrietta’s family deserve 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, chpt 24, p03). The journalists, on the other hand, 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 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, chpt 24, p06).

Compensation and Recognition

I believe that 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 solely 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.

The Case of John Moore

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.

Moore's Lawsuit

In the case of John Moore, researchers removed his spleen to aid in his leukemia treatment. Moore’s doctor later realized that there was a great financial and scientific potential in his patient’s cancerous cells. The doctor then frequently established a cell line on the lymphocytes that he extracted, patented the cell line and spent a lot of 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).

Patient Consent and Rights

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. In my opinion, patients 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 patient consent concerning their organs.

Johns Hopkins Hospital

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 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/her information is disclosed for healthcare 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.

The Case of Ananda Mohan Chakrabarty

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 {title 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 on 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 was 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.

The Epigraph

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 the Lacks family except for Rebecca Skloot who was respectful to the family.

Ethical Violations in Medical 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

Skloot, Rebecca. The Immortal Life of Henrietta Lacks. ALONDRA NELSON, Columbia University; editor of Technicolor: Race, Technology, and Everyday Life, p.3-381, 2010. Print

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/