Running head: ETHICALITY OF WRITING The Immortal Life Of Henrietta Lacks 1

Ethicality of Writing The Immortal Life Of Henrietta Lacks

Rebecca Skloot Is Justified In Interviewing the Lacks Family

Matthew C. Roberts

University of California Berkeley

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Ethicality of Writing The Immortal Life Of Henrietta Lacks

Rebecca Skloot Is Justified In Interviewing the Lacks Family

Humanity often debate the ethicality of medical progression. In modern society, there is a

set of guidelines that state what is and is not allowed when doing medical research. One of the

most important rules when doing medical research is gaining the consent of participants.

However, what is best for the patient was not always considered. Doctors used to treat people as

they saw fit and without the participants consent. Ethical guidelines became necessary for people

to not be harmed for someone else's gain; however, many patients had already been taken

advantage of before the regulations took effect. Rebecca Skloot, the author of The Immortal Life

of Henrietta Lacks, responded to one of the families that had been taken advantage of by

researchers. With perseverance, she contacted the Lacks family who had loved one, Henrietta

Lacks, whose cells were stolen for scientific research. However, Skloots pestering the family in

order to write The Immortal Life of Henrietta Lacks (2011) can be seen by many people as

unethical, but I believe Skloot is ethical when writing the book. By writing the book, Skloot

attempts to correct the wrong doctors have made towards the Lacks family. She does so by

explaining to Deborah, Henrietta Lacks daughter, the significance of her mothers involuntary

contribution to science and by writing a book in remembrance of Henrietta Lacks.

Many doctors alive in the 1960s, around the same time as Henrietta Lacks, did not care

to ask patients they used in their experiments for their consent. Skloot brings up an ethical

dilemma with doctors not obtaining patient consent by describing the research of Southam who

injected modified HeLa cells into people without consent as illegal, immoral, and deplorable

(Skloot, 2011, p. 134). She then went on to show that the doctors were saying theyd been

conducting similar research for decades (Skloot, 2011, p. 134). By saying that Southhams
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research was not ethical and that it was within the norm of that era Skloot gives a vivid

description of the abusive relationship doctors had with their patients. Also, Skloot provides

insight on her beliefs on how the scientific community has wronged people by expressing her

opinion. Skloot furthers her argument by giving the doctors retort that if they are prevented

from attempting seemingly innocuous studies of cancer behavior in humans(they) may mark

the 1966 as the year in which all medical progress ceased (Skloot, 2011, p.235). The doctors

point is melodramatic and uncalled for. However, Skloot begins to show her ethical guidelines

by showing the immoral and outlandish views of the doctors.

Skloots morals lead her to attempt to correct the abuse of the doctors towards the Lacks

families. Her task would be hard since doctors who attempted to correct Henrietta Lacks

cervical cancer and stole her cells left the Lacks family with nothing. Skloot believed the best

way she could help the family was by providing the family and the public with greater

knowledge of Henrietta Lacks. Skloot paints an image of Henriettas children left, grieving,

without being told what had happened to their mother, and they were afraid to ask (Skloot,

2011, p. 111). Many of Henriettas offspring had but a memory of Henrietta since she died such

at a young age. The children mainly remembered their second guardian Ethel, who worked the

Lacks children from sunup to sundown without breaks, food, or water (Skloot, 2011, p. 111).

Skloot attempts to build the reader's sympathy for the Lacks children with these toils. She uses

that sympathy to establish the nobility of her quest to uncover the truth about Henrietta Lacks.

Skloot prove that her motives were moral by depicting the effects of her work with the

family. Zakariyya, another one of Henrietta Lacks children, was a particularly elusive to Skloot.

It takes her over a year for Skloot to interview the evasive and distrustful Zakariyya. He does not

want anything to do with doctors or the HeLa cells since they were taken from his mother
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without consent or attribution to her name. However, Skloot brings him to a doctor who

understood Zakariyyas resentment. She (witnessed) a miracle (Skloot, 2011, p. 267) when

Zakariyya expresses thanks to the doctor. However, this miracle only happened because she

worked hard to help Zakariyya by finding a doctor who actually recognized his colleges

misdeeds.

The major ethical dilemma Skloot faces when writing her book occurs in how she shares

her findings to the family since it can cause them suffering. Thus, many people will see Skloot as

unethical in writing her book since Deborah Lacks suffered in the process. The memory of

Henrietta Lacks and her struggles lead the family on a rollercoaster of emotions whenever they

found new information about Henrietta Lacks. For example, Deborah, when learning about her

mother, breaks down between interviews. Skloot describes this scene showing Deborah turning

to the Lord saying, Thank you Lord for giving me this information about my mother and sister,

but please HELP ME, cause I know I cant handle this burden by myself (Skloot, 2011, p.

292). Skloot believes that she inadvertently caused Deborah to suffer by discovering new

information on Henrietta Lacks. Skloot even thinks that the information she uncovered was the

cause of one of Deborahs panic attacks (Skloot, 2011, p. 292). Thus, many people will say that

Skloot was unethical in bringing up these new emotions. However, in Skloots defense, she did

not mean to cause suffering. Even though these emotional responses were powerful, Skloot still

helped the family by attempting to make the Lacks more knowledgeable about Henriettas cells.

The emotional struggle needed to happen for Skloot to talk honestly about Henrietta to the

family.

Once Skloot is able to talk with the family openly, she can hear exactly how they feel

they were wronged by doctors. The Lacks family, at the very least, wanted Henrietta Lacks to be
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remembered for her contribution to society, especially since Henrietta was known to the world

mainly as HeLa or mistakenly as Helen Lane due to an overly eager reporter. As Skloot points

out, scientists do not tend to think about the fact that the cells came from a real person (Skloot,

2011, p. 91). However, the family wanted Henrietta to be associated with her cells so she would

not be forgotten for her contribution. It would be wrong if scientists and humanity would benefit

from her sacrifice and not know who their benefactor was. Even though it can be argued that the

media made sure that the public was aware of the HeLa cells, they were significantly lacking

when it came to whose cells HeLa belonged to since, Helen showed up in articles again and

again with different last names (Skloot, 2011, p. 175). By writing her book, Skloot helped

clarify that the HeLa cells were actually Henrietta Lacks. Even though, Skloot did not know that

her book would become widespread when she wrote it, she at the very least created clarity about

Henrietta Lacks contribution to society.

Skloot shows how she is different from the doctors because of her ethical boundaries. She

demonstrates her ethics in order to show the reader why she is justified in putting the Lacks

family through emotional struggles. Many people believe Skloot caused far more pain for

Deborah than she could handle and should not have interviewed her. However, Deborah wanted

to learn about her mother. She would accept any documents Skloot sent her about her mother and

Deborah learned how to use the internet in order to look up more on her mother (Skloot, 2011, p.

252-254). Similar to the lack of consent between doctors and patients in the 1950s, the lack of

information would cause Deborah far more pain. She would never know about her mothers

legacy and the Lacks family would never trust doctors again. Deborah was happy the reporting

was going so good ( Skloot, 2011, p. 277). Thus, unlike the doctors patients, Deborah both

found benefits and consented to working with Skloot.

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Skloot overall helped the family by writing the book. She undid some of the wrongs of

taking the HeLa cells. She unraveled the hidden past of Henrietta causing pain and suffering for

the Lacks family, but she also was able to heal many of the old wounds doctors left them. She

showed how the unethical behavior of Henrietta Lacks doctors harmed the Lacks family.

Following her ethics, Skloot gave credit to Henrietta Lacks for the HeLa cells and helped the

world know about Henriettas contribution to medical research. Skloot uses the familys

emotional struggles to show how a better understanding of HeLa resulted in the family feeling

closer to Henrietta overall. Through a heartwarming devotion to the Lacks family, Skloot in a

way becomes one of the family since she helped them understand their beloved Henrietta.
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References

Skloot, R. (2011). The Immortal Life of Henrietta Lacks. Broadway Books.