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mommy-and-leader · 4 years

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How Henrietta Lacks’ Story Taught Me How to be a More Compassionate Leader in Healthcare

The story of Henrietta Lacks is both a story of miracles and of tragedy. The history of the HeLa cell is truly the stuff of scientific miracles. However, the story of Henrietta Lacks, the patient who unwittingly donated the cells, and whose family has suffered as a result, is heartbreaking. In reading Rebecca Skloot’s best-selling book, I admit that I read the story through the eyes of a leader in healthcare. I was ready to defend my field and my peers in the field. However, as I read both the personal story of Henrietta Lacks and the Lacks family, as well as the story of the HeLa cell, I was astonished at the amount of betrayal I felt as a warrior of science. Many criticize Skloot’s book as reminiscent of a novel, and problematic in the way that she reports it like she sees it- from sexually transmitted diseases, child abuse, abusive marriage, child molestation- Rebecca leaves no stone unturned in her ten-year mission to learn about Henrietta Lacks and her contribution to science.

Christoph Lengauer, the first scientist that was willing to speak with the Lacks children, said it best by stating, “Whenever we read books about science, it’s always HeLa this and HeLa that. Some people know those are the initials of a person, but they don’t know who that person is. That’s important history” (Skloot, 2011, p. 266). Rebecca Skloot’s book was successful in uniting the person, Henrietta, with the cells. The cells were not the only important discovery in science. The story of the person was important for healthcare and could teach us a lesson about being a compassionate caregiver in healthcare.

Critics state there are problematic elements in Skloot’s portrayal

In a poetic analysis of the book, Lantos (2016) reinforces the idea that Skloot’s book further exploits the Lacks family in its overshare of private details of their lives, namely Deborah’s abusive marriage and divorce, the imprisonment of her children and details of the crimes, and even the amount of Deborah’s social security check. Daniel Podgorski, a literature reviewer for the Gemsbok, comments on Skloot’s exploitative position relative to the Lacks family, stating that she, however, tells an important and even story (Podgorski, 2016). Podgorski (2016) states:

Skloot adopts a neutral tone throughout her book and presents the facts of the cases and lives involved evenly, and, in doing so apolitically, manages to expose the inextricable story of racial segregation operating above and with scientific progress in the twentieth century without sacrificing journalistic integrity…she presents all people in her book as part of this one grand narrative of humanity, each a character as in a novel, susceptible to moral and critical judgments by the reader, and a human being, and so representative of a faction of reality (Podgorski, 2016).

While most of the Lacks family disagrees, two Lacks men have come forward regarding their feelings of contempt toward Rebecca Skloot, and HBO, who produced the film portrayal of Skloot’s book. Bustle reports that Lawrence and Ron Lacks (Henrietta’s son and grandson) feel exploited by Rebecca in the same way that they felt exploited by Johns Hopkins. “Skloot portrayed the Lacks family as falsely uneducated and poor. ‘She made us stereotypes…people think we’re dirt poor’” (Truffaut-Wong, 2017). Lawrence Lacks even goes on to tell the Bustle reporter, “It’s bad enough Johns Hopkins took advantage of us. Now Oprah, Rebecca, and HBO are doing the same thing. They’re no better than the people they say they hate” (Truffaut-Wong, 2017). However, the article goes on to give a comment by HBO, stating that the film had overwhelming support from many Lacks family members.

In my reading of the book, I found a number of details cringe-worthy in their honest horror, and I admit that they horrified me as a woman and as a mother. First, there was Day’s character as a young husband and father. Early on in the book, in Chapter 1, Day is painted as an adulterer (Skloot, 2011, p 13) and later on, it is explained that the sexually transmitted diseases he passes on to his wife, Henrietta, are the reason why her cervical cancer is so aggressive. Later, in Chapter 15, Deborah’s physical and sexual abuse by her uncle, Galen, is another one of those details that breaks your heart and keeps you up at night. You wonder if you can do without hearing these atrocities suffered by this family. Then you keep reading on and get to the part where Day, her father, did not protect her from this incestuous monster (Skloot, 2011, p. 113) and you want to both kill Day again and embrace Deborah in all her suffering. This rollercoaster of emotion keeps you reading voraciously and really humanizes this family.

While I do agree that these details are of a very private nature, they served their intended purpose in conveying the message that Henrietta was a real person. She is not just a cell. She is a real woman who had a real family- who are still alive today- and still suffering from the aftermath of the notoriety of the HeLa cells, which were taken without Henrietta or her family’s consent, and have changed the face of medicine (and made millions since their theft). What makes a person or a family more human than the reality of their flaws?

How the story helped me in my role as a leader in healthcare

This story is not only an exposé of all of the skeletons in the Lacks family closet, but it was a discussion on racial disparity and medical mistrust in the African American community, and of informed consent, or the lack thereof, for Henrietta and the Lacks family. It was the story of any and all of the above. As an African American woman visiting a public ward in the 1950s, Henrietta had no choice when it came to research, as was the same with all the black patients at Johns’ Hopkins’ public colored ward (Skloot, 2011, p. 29). This was the era of racism, segregation, and Jim Crow laws. Black patients had no choice but to trust the word of their doctors, and not many words came from these doctors. They weren’t informed of many details of the treatment for Henrietta’s cervical cancer, nor were they informed of the cells they took from her in research, nor were they informed of the fruit of those cells- a medical revolution.

These cells crossed the world. In 1952, they were the first living cells shipped via postal mail. They helped develop the polio vaccine, the cervical cancer vaccine, and many drugs. They were the first cells ever cloned and were also the first cells ever hybridized with the cells of an animal- a human-mouse hybrid. The discoveries were endless and are still being made. The fruit of the research of the HeLa cell was ample, and the financial gain was enormous. However, this was all unbeknownst to the Lacks family. In fact, they were unaware of the existence of these cells until 1973- more than 20 years later! It wasn’t until 1975 that the Lacks family knew of the immense contribution to science and the commercialization of the cells after a reporter for Rolling Stone interviewed them and published a story about Henrietta Lacks. Their mother’s cells now had a name, and a family, and her medical history was out for the world to read about.

This is what pulled on my heartstrings. As a medical professional, I am a bleeding heart. I regularly encounter some of the most vulnerable sick people who just need someone to take care of them and often to advocate for them. Here was this woman- a poor and educated minority who just wanted to trust her caregivers- who died at the age of 31. She left behind a family of many small children, one of whom was disabled. That family defined struggle. They were uneducated, poor, and struggled into adulthood. Henrietta needed a caregiver, an advocate. Her children needed this, too. When they learned of their mother’s cells and notoriety, they felt deceived and rightfully so. Here they were struggling from health issues of their own and could barely get medical insurance- yet their mother’s cells created much of what we think of when we think of modern-day healthcare. Where were the Lacks’ caregivers? Why did no one in the medical field feel that they needed to be taken care of, in their vulnerability?

With this lesson of bioethics and medical mistrust: How do we prevent this from happening again?

Though Henrietta’s contribution to science was immense, it was done without her consent or the consent of her family. When Henrietta was identified and her family was made aware of the enormity of this situation, the Lacks family was still kept in the dark. The scientific and medical community continued to take advantage of the Lacks’ by deceiving them into giving blood to further their research into Henrietta’s genome and disguised this as “cancer testing” (Skloot, 2001, pp. 183-189). There were so many opportunities for the medical community to make this right, but no one stepped up to bat.

So how do we make sure that this never happens again? First, we need to remember why we went into this field- to help others, to save lives. Some of those that I have worked with in healthcare are caregivers in every sense of the word- they are bleeding hearts and some of the most moral and ethical people that I have ever met. Physicians down to nurse’s aides, almost everyone I have worked with have come into this field to make this world a better place by helping those that we can. As a leader in the field, this is an important trait that I look for in all members and prospective members of my team. In order to prevent this from ever happening again, we must convey a culture of ethics and compassion. By selecting and hiring ethical employees and fostering ethical decisions by acting ethically and helping your employees act ethically, you instill a compassionate and compliant environment (“How Managers”, nd). Talking through decision-making and being seen as a moral authority are important to convey an ethical and compliant culture in your organization.

As a caregiver in healthcare, it is always important to put yourself into the patient’s shoes. What if this were you? What if this were your mother? Always treat the patient as you would like for your family to be treated- or like you would like to be treated, yourself. Always be an advocate- just because you understand doesn’t mean they do. Informed consent was a big deal in this book, and it is a big part of the mistake that we do not want to be duplicated. It is important to talk through every diagnosis, every treatment, every procedure, until they understand. It is good practice to make sure that they can reiterate and explain it back to you. Informed consent is not only a form to be signed- it is peace of mind for both the caregiver and the patient.

Conclusion

In The Immortal Life of Henrietta Lacks, Rebecca Skloot goes into detail regarding Henrietta and her family’s life in order to tell a story apart from the story that was currently understood as conveyed by science- the story of the HeLa cell. By separating the story of the HeLa cell from the story of the Lacks family, Skloot effectively conveys the ramifications of the HeLa cells’ scientific contributions and commercialization on the Lacks family. Rebecca Skloot’s portrayal of Henrietta Lacks and her family may have been intense, but that intensity was key in conveying the central idea of the abhorrent treatment of the Lacks family by the medical and scientific community. This book was meant as a lesson, and I hope that the whole field hears it loud and clear.

References

How Managers Can Encourage Ethical Behavior. (nd). Lumen Learning: Principles of Management. Retrieved March 8, 2020 from: https://courses.lumenlearning.com/wm-principlesofmanagement/chapter/how-managers-can-encourage-ethical-behavior/

Lantos, J. D. (2016). Thirteen Ways of Looking at Henrietta Lacks. Perspectives in Biology and Medicine, 59(2), 228-233. Retrieved from https://search-proquest-com.contentproxy.phoenix.edu/docview/1876059666?accountid=35812

Podgorski, D. (2016). Creative Journalism: American Race Politics, Perspective, and Shifting Culture in The Immortal Life of Henrietta Lacks. The Gemsbok. Retrieved from: https://thegemsbok.com/art-reviews-and-articles/tuesday-tome-immortal-life-henrietta-lacks-rebecca-skloot/

Skloot, R (2011.) The Immortal Life of Henrietta Lacks. New York, NY: Broadway Books

Truffaut-Wong, O. (2017). What Does the Lacks Family Think Of 'The Immortal Life Of Henrietta Lacks'? The Movie Portrays Their Heartbreaking Story. Bustle. Retrieved from: https://www.bustle.com/p/what-does-the-lacks-family-think-of-the-immortal-life-of-henrietta-lacks-the-movie-portrays-their-heartbreaking-story-51712

#HeLa #Skloot #HenriettaLacks #ImmortalCells #Healthcare #HealthcareLeadership #MommyLeader #MomsinHealthcare #MommyCaregiver #EthicalLeadership #LeadWithCompassion

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