APRN 707 The Immortal Life of Henrietta Lacks
docx
keyboard_arrow_up
School
Chamberlain College of Nursing *
*We aren’t endorsed by this school
Course
707
Subject
Medicine
Date
Dec 6, 2023
Type
docx
Pages
15
Uploaded by tsteen09
1
The Immortal Life of Henrietta Lacks: An Ethical Paper
Francis Marion University
APRN 707: Clinical Decision-Making & Ethics
Dr. Hucks
July 25, 2021
2
Abstract
This paper will discuss the book by Rebecca Skloot, “The Immortal Life of Henrietta Lacks.”
The paper will outline my synopsis and impression of the book. It will also give detail to one
ethical dilemma that was portrayed in the book in relation to the ANA’s Code of Ethics. The use
of narrative medicine will also be discussed, both the good and bad. This paper will also dive
into the different aspects and parallels between the disease and treatment that Henrietta Lacks
endured to COVID-19. Lastly, this paper will describe how my practice has been impacted and
influenced from this book and the information learned from it.
Keywords:
Henrietta Lacks, ethical dilemmas, COVID-19, narrative medicine
3
The Immortal Life of Henrietta Lacks: An Ethical Paper
The story of Henrietta Lacks portrays racism, terrible and painful life experiences of the
family that was left behind, and the violation of scientific ethics. Rebecca Skloot wrote the book
“The Immortal Life of Henrietta Lacks” who was the mother of five children and was diagnosed
with cervical cancer and her cells were harvested without her knowledge or consent (Skloot,
2010). In the 1950’s, medical professionals were not mandated to get consent from their patients
(Skloot, 2010). Not only was Henrietta unaware of her cells being taken but so was her family.
For years, they were unaware of the impact that her cells had on the medical field (Skloot, 2010).
Henrietta endured the most horrendous life events that began at the tender age of four. She lost
her mother and her father decided to uproot their lives and relocate the family. She fell pregnant
at fourteen by her cousin, Day Lacks (Skloot, 2010). Life never really favored Henrietta and it is
hard for me not to think that her life would have been very different had her father not relocated
them.
Henrietta’s children were Lawrence, Elsie, Deborah, Sonny, and Joe (Skloot, 2010). Life
also never favored her children, as each of them also faced many challenges and hardships.
Deborah was also a teen mother and was married to her boyfriend (Skloot, 2010). This was an
unhappy union and resulted in divorce soon after. Elsie had mental handicaps that made
everyday life hard (Skloot, 2010).
This handicap could depict the negative outcomes that results
from inbreeding. Lawrence did not finish school and was sent to Vietnam (Skloot, 2010). Sonny
was in the Airforce and ended up on drugs (Skloot, 2010).
Her son Joe killed a man and
converted his religion to Islam (Skloot, 2010).
There were several social, environmental, and behavioral aspects present in the book that
potentially led to the mishap and suffering endured by Henrietta prior to her death and that of her
Your preview ends here
Eager to read complete document? Join bartleby learn and gain access to the full version
- Access to all documents
- Unlimited textbook solutions
- 24/7 expert homework help
4
family after her passing. Henrietta Lacks was African American, and it is thought that the
decision to harvest and use her cells for scientific purposes was directly linked to her race. The
book took place during the 1950’s and African Americans were believed to be lesser than others
during this time.
The cells that were harvested from Henrietta without consent are known as HeLa cells
(Skloot, 2010). Although the act of taking them without her knowledge or consent is ethically
wrong, the study of the cells has profoundly broadened cancer research and treatment (Skloot,
2010). There is now a better understanding of cancers and the possibly implications it may have
on patients (Skloot, 2010).
There were several different themes that were evident in this book. The first is that of
dehumanization. Dehumanization is when the qualities of individuals are stripped away (Smith,
2012).
The death of Henrietta was not concerning to the medical professionals; however, they
were deeply involved with the research that was arising from her cells. The next theme
throughout the book is immortality. Her cells have proven to provide groundbreaking knowledge
in the field of cancer research as they were the first human cells that were able to grow in the
laboratory (Skloot, 2010). Even after the cells were removed and separated from her body, they
lived (Skloot, 2010). The idea of racism that was present in medicine was shown through the
reading. The harvesting of cells without the consent of an African American women led to the
distrust of doctors and medical professionals by African Americans (Skloot, 2010). Racism was
also portrayed as Henrietta sought treatment at Johns Hopkins since it was the only hospital that
would treat African Americans. The hospital would treat African Americans but remained
segregated at this time (Skloot, 2010). The hospital provided care in their public ward for those
5
of poverty, Caucasian or African American (Skloot, 2010). The belief that since her care was
being received at no cost, there was no issue with taking the cells for free as well.
My Synopsis and Impression
I feel as if the book profoundly represents and brings to light a common factor that is still
very much present today. That is how most individuals tend to take advantage of another’s
misfortune to benefit in some aspect. The doctors at Johns Hopkins did not take the most
appropriate approach to treatment for Henrietta Lacks condition. Instead, they harvested cells
without permission that would potentially benefit their careers. Skloot (2010) depicts the events
that occurred as a “necessary evil” especially for the field of modern medicine. Medical ethics
have since evolved and medical professionals are required to receive consent prior to proceeding
with any procedures or treatments (Skloot, 2010). There was a lack of education and guidance
available to Henrietta and I believe had the resources been provided, the decisions she made
regarding her healthcare would have been much different.
Ethical Issues
Henrietta Lacks story has raised many ethical questions that remain unanswered to this
day. One being should individuals have the right to control what is done with their specimens
once they leave their bodies? There are millions of samples that have been collected during
procedures such as fetal genetic-disease screenings and circumcisions that cannot be linked to an
individual. The samples are used for medical research and pave the way for medical
advancements, but does that make it right? I think it is safe to say that individuals want research
into diseases, treatments, and cures to continue. However, I also believe that individuals want to
be aware when it is their specimens being collected and used.
6
When the medical community stands to benefit and profit from the use of these
specimens, should a portion of that profit and acknowledgement be shared with the beholder?
Skloot (2010) demonstrates and displays the countless relief that has been gained to patients
from the harvest of the HeLa cells. However, the Lacks family has had to endure not only losing
their mother, but not knowing about the use of her cells which led to confusion, pain, and
embarrassment (Skloot, 2010). You must ask yourself, is the greater good enough compensation
for all those individuals face afterwards (Skloot, 2010)?
Grace (2018) states that when the subject of research involves human subjects, there is a
temptation and tendency of those conducting the research to lose sight of the goal. The goal of
human subject research is the promotion of good to humans (Grace, 2018). Most healthcare
providers may feel like they understand the meaning of human subject research, however, the
constitutions of human subject research can be difficult as they are not always clear cut (Grace,
2018). The
Code of Federal Regulations
(C.F.R.) defines research as a “systemic investigation,
including research development, testing, and evalution, designed to develop or contribute to
generalizable knowledge” (Grace, 2018, pg. 175). They also define human subjects as “a living
induvial about whom an investigator (whether professional or student) conducting research
obtains (1) Data through intervention or interaction with the individual, or (2) Identifiable private
information (Grace, 2018, pg. 175).
Using human subjects for research dates to ancient Roman times (Grace, 2018).
However, we are now aware of what is know as human subject abuses (Grace, 2018). There are
several indicative attitudes that coincide with these abuses such as: researchers desire to further
the social good regardless if it is risky for the participants, the human subjects are not a
significant moral concern and the want to gain information by any means, the belief that certain
Your preview ends here
Eager to read complete document? Join bartleby learn and gain access to the full version
- Access to all documents
- Unlimited textbook solutions
- 24/7 expert homework help
7
classes of individuals like slaves, minorities, and lower classes are not as worthy of concerns as
others, some individuals are disposable, and the want and pressure to complete the ambition
whether it is personal or professional (Grace, 2018). Research in different fields have led to an
increased understanding on the influence of bias, prejudice, and self-interest of action has had on
research that is derived from human subjects (Grace, 2018).
There has been many advancements and developments in the regulations and policies
related to human subject research regulations (Grace, 2018). The Nuremberg Code and The
Declaration of Helsinki are two that were discussed in Grace (2018). The Nuremberg Code was
established as an attempt to protect the rights of humans and states that “the voluntary consent of
the human subject is absolutely essential” (Grace, 2018, pg. 180). The Declaration of Helsinki
introduced the idea of proxy consent (Grace, 2018). This was permitting another individual to
give permission for an individual without decision-making capacity to participate in research
studies (Grace, 2018).
Neither of these developments were pertinent or helpful for Henrietta Lacks. Her cells
were still harvested unbeknownst to her or her family and used for revolutionary scientific
findings. The ethical principle of autonomy, or respect for persons, was completely disregarding
in the case of Henrietta Lacks. There was a lack of respect shown for her as an African American
woman with only a sixth-grade education (Skloot, 2010).
The ethical principle of altruism also comes to mind when regarding Henrietta Lacks.
Altruism is the motivation that is not primarily that of self-serving but more for the interests of
others (Grace, 2018). Henrietta was not given the opportunity to independently help aid in the
research and benefits to others that came from her cells. Would she have consented had she been
given the chance?
8
There are difficulties in protecting human research subjects’ rights that have not been
resolved and are still present today (Grace, 2018). However, due to cases in the pass like that of
Henrietta Lacks, the research endeavors involving human subjects have been greatly improved
(Grace, 2018). Society recognizes and appreciates the need for ongoing research that contain
human subjects and strives to improve the process have been made and are still being made
(Grace, 2018).
Narrative Medicine
The art of narratives has always held a critical role in that of medicine (Kalitzkus &
Matthiessen, 2009). However, narrative medicine has changed from the provider’s narrative to
the narrative of the patient (Kalitzkus & Matthiessen, 2009). Narrative medicine is a growing
field in the healthcare arena and is one that strives to provide a more satisfying medical
experience (Wong, 2020). The practice of narrative medicine is one that encourages the patients
to their stories regarding their health (Wong, 2020). The belief is that providers can more
thoroughly and accurately provide care and treatment to the patient regarding the condition(s)
(Wong, 2020).
Providers that practice by means of narrative medicine believe that a patient’s emotions
and life experiences have likely influenced their health and they desire to get an understanding
that is deep from the patient’s story (Wong, 2020). When the patient shares their story, the
provider feels they can receive a more complete picture of illness and condition and just how it
has impacted the patient’s everyday life (Wong, 2020). The use of narrative medicine is also
believed to offer a more insightful treatment approach and different self-care strategies that are
more conducive to the patient (Wong, 2020).
9
Dr. Rita Charon stated that narrative medicine is the means to bridge any divides that may
be separating the provider and the patient and is a more holistic approach to treatment (Wong,
2020). Narrative medicine primarily looks past the symptoms and treatment options and allows
the provider to consider the patient’s needs, beliefs, and values (Wong, 2020). The patient is
viewed as a whole and as unique to any other patient (Wong, 2020).
One benefit to using narrative medicine is that empathy is instilled in the provider which
improves the quality of care that is received by the patients (Wong, 2020). Studies have shown
that more positive patient outcomes are linked to higher levels of provider empathy (Wong,
2020). The field of narrative medicine requires significant technical and attitude changes to
occur, and those changes do not always happen quickly (Kalitzkus & Matthiessen, 2009).
Another downfall to narrative medicine is that several patients and providers feel intimidated
(Wong, 2020). Also, the fact that the field of narrative medicine is still-emerging, and many
providers and patients may be unfamiliar with all the principles that this practice may entail
(Wong, 2020). The biggest challenge of narrative based practices is the art of knowing when to
stop (Kalitzkus & Matthiessen, 2009). Providers in the narrative medicine field tend to get
carried away by the idea of the narratives but disease, disability, deprivation, and death are not
stories but are facts (Kalitzkus & Matthiessen, 2009).
I believe that the use of narrative medicine is beneficial regarding the story of Henrietta
Lacks for many different reasons. However, I believe that the most important is that it provides
some means of closure to her family. It is also important because in healthcare practices today,
medical research heavily relies on biological samples like that of the HeLa cells from Henrietta.
The family now knows just how important her cells were to medical advancements and they
have had the chance to ask questions that they have longed to have the answers to for quite some
Your preview ends here
Eager to read complete document? Join bartleby learn and gain access to the full version
- Access to all documents
- Unlimited textbook solutions
- 24/7 expert homework help
10
time (Skloot, 2010). They can now have a peace of mind that her cells have provided research
that has ended many peoples suffering (Skloot, 2010). Although that is not a replacement for
what was done to her, it is some sort of peach of mind for them. The HeLa cells were the first
‘immortal’ cell line that was ever capable of growing in the laboratory and is now used in
laboratories all over the world for medical research purposes and advancements to diagnosis,
treatment, and care plans (Skloot, 2010). Her family is finally able to see just how important
Henrietta’s contribution was and she deserves be remembered by them and society as whole as a
true medical hero.
COVID-19 Parallels
The coronavirus disease 2019 (COVID-19) is a pandemic that has ultimately place
horrific demands and strains on the healthcare field and the healthcare providers worldwide
(Chamsi-Pasha, Chamsi-Pasha, & Albar, 2020). There have been numerous ethical issues that are
challenging and unprecedented across the globe (Chamsi-Pasha, Chamsi-Pasha, & Albar, 2020).
There has been an abundance of patients that require critical care and in turn, creating a scarcity
of critical care resources (Chamsi-Pasha, Chamsi-Pasha, & Albar, 2020). This also revealed the
need for a formal standard of care for crisis’s (Chamsi-Pasha, Chamsi-Pasha, & Albar, 2020).
There has been more difficult life and death decisions made during this pandemic that has
resulted in severe moral distress to the providers (Chamsi-Pasha, Chamsi-Pasha, & Albar, 2020).
There have also been other ethical dilemmas to arise such as conduction of clinical trials to
potentially save lives and the increase of deaths related to domestic violence because of the
quarantine requirements (Chamsi-Pasha, Chamsi-Pasha, & Albar, 2020).
Ethical questions regarding the need for treatment prioritization, personal protective
equipment availability, testing, and resuscitation decisions have all arose due to the pandemic
11
(Chamsi-Pasha, Chamsi-Pasha, & Albar, 2020). As the pandemic continues to progress, other
ethical based challenges tend to arise such as the best means for dealing with vaccination
research and how patients are prioritized in relation to receival of medical care and supplies
(Chamsi-Pasha, Chamsi-Pasha, & Albar, 2020).
One correlation between the COVID-19 disease and the story of Henrietta Lacks is that
of vulnerability. Henrietta’s cells were harvested without her consent due to her being an
uneducated, African American women from a lower class. Which is also the case for some
aspects of treatment for COVID-19. Allocation of lifesaving resources that are in scarce supply
makes the geriatric population, minorities, and those with disabilities more vulnerable to a lapse
in treatment (Chamsi-Pasha, Chamsi-Pasha, & Albar, 2020). The teams that are responsible for
triaging the patients should be adequately equipped to put in place the criteria for prioritization,
that will minimize bias and avoid any negative outcomes or consequences (Chamsi-Pasha,
Chamsi-Pasha, & Albar, 2020). Henrietta Lacks should have been afforded these rights to her
care as well. There have been numerous critical decisions made when the whole truth was not
disclosed or there were small fabrications made. The decision to withdraw life sustaining care
can be difficult in general. However, when there are means of miscommunications, lack of
communication, or fabrications to the information, the decision becomes even more of an ethical
dilemma (Chamsi-Pasha, Chamsi-Pasha, & Albar, 2020). This was in a sense the same scenario
that occurred with Henrietta. There was no communication regarding taking her cells from her or
the intention of use for them. Her family was also kept in the dark for many years after her
passing about the collection and use of her cells. There were also fabrications about the harvest
in a means to cover up the story and events that transpired.
12
The relationship between medicine and ethics is one that is intimate and unequivocal
(Chamsi-Pasha, Chamsi-Pasha, & Albar, 2020). The contribution of ethical perspectives is one
that is invaluable, especially during a pandemic or cases such as Henrietta Lacks cell harvest
(Chamsi-Pasha, Chamsi-Pasha, & Albar, 2020). For current providers to make the proper
decisions and maintain the best standard and quality of care for their patients, it is crucial that the
ethical challenges that emerge be identified and resolved (Chamsi-Pasha, Chamsi-Pasha, &
Albar, 2020).
The cells from Henrietta Lacks have been used to carry out research for some of the most
profound medical breakthroughs we will see in our time and some before our time (Henrietta
Lacks and her contribution…, 2020). Research regarding the first polio vaccine, in-vitro
fertilization, cancer, and effects of SARS-CoV replication in the body has steamed from the cells
received without consent from Henrietta Lacks. The research has provided input for development
of a vaccine for the coronavirus 19 (Henrietta Lacks and her contribution…, 2020). COVID-19
has wreaked havoc on the minorities in America and the scientific field is being forced to
acknowledge and confront the unequal treatment to blacks and other minorities historically and
present times (Henrietta Lacks and her contribution…, 2020).
Many of the cells that are utilized in the research of vaccine formulation is that of cells
derived from elected abortions (Henrietta Lacks and her contribution…, 2020). However, there
have been incentives from the Catholic leaders for COVID-19 vaccines that do not utilize fetal
cells (Henrietta Lacks and her contribution…, 2020). The use of the HeLa cells proposed
different questions and possibilities in the development of vaccinations for COVID-19 (Henrietta
Lacks and her contribution…, 2020). The prospect of ‘restorative justice’ emerges as many of the
contributions in the medical field from blacks over the years have been disregarded or not
Your preview ends here
Eager to read complete document? Join bartleby learn and gain access to the full version
- Access to all documents
- Unlimited textbook solutions
- 24/7 expert homework help
13
acknowledged (Henrietta Lacks and her contribution…, 2020). The hope to correct the historical
wrongdoing of Henrietta Lacks and other minorities that have contributed to advancing the
medical field lies in the vaccination commencing in full force (Henrietta Lacks and her
contribution…, 2020).
Impact and Influence on My Practice
“The Immortal Life of Henrietta Lacks” was such an insightful read. I feel as if there was
so much information that I learned and so much information that I long to learn more about. One
major aspect I took from this was that of humanity. I intend to practice with the mindset of never
allowing my desire for certain aspects cloud my recognition of the humanity of my patients. I
also learned that I do not ever want to submit to others when the actions are wrong or may inflict
pain upon my patients. I also never intend to be the authoritative figure that puts my coworkers
in that position as well. I want the best interest of my patients and their loved ones to be the
center of my care and the backbone of how I provide care. At the end of the day, healthcare
providers went into this field to provide help and guidance to those that are in need. We should
remember that and strive to always keep our patients and their goals and outcomes as the top
priority. I know that this will not always be easy and that I will be faced with numerous ethical
dilemmas and challenges. However, I hope that I will elicit the appropriate help and guidance
and that the patient will always receive the best quality of care and empathy that I can provide
them.
14
References
Chamsi-Pasha, H., Chamsi-Pasha, M., & Albar, M. A. (2020). Ethical dilemmas in the era of
COVID-19.
Avicenna journal of medicine, 10
(3), 102-105.
https://doi.org/10.4103/ajm.ajm_119_20
Grace, P. J. (2018).
Nursing ethics and professional responsibility in advanced practice
(3
rd
ed.).
Jones & Bartlett.
Henrietta Lacks and her contribution to Covid-19 vaccine (2020).
Hindustan times.
https://www.hindustantimes.com/world-news/who-is-henrietta-lacks-and-what-s-her-
connection-to-the-covid-19-vaccine/story-neC7CB4IUabGiFgJVbbp2L.html
Kalitzkus, V. & Matthiessen, P. F. (2009). Narrative-based medicine: potential, pitfalls, and
practice.
The Permanente journal, 13
(1), 80-86.
https://doi.org/10.7812/tpp/08-043
Skloot, R. (2010).
The immortal life of Henrietta Lacks.
Crown Publishers.
Smith, M. (2012). Dehumanization in medicine.
Counsel & Heal: Mental Health.
https://www.counselheal.com/articles/1393/20120323/dehumanization-medicine.html
Wong, C. (2020). How narrative medicine might benefit you.
Verywell Health.
https://www.verywellhealth.com/narrative-medicine-benefits-uses-and-tips-
4143186#:~:text=One%20of%20the%20core%20principles%20of%20narrative
%20medicine,be%20associated%20with%20more%20positive%20outcomes%20in
%20patients
.
15
Your preview ends here
Eager to read complete document? Join bartleby learn and gain access to the full version
- Access to all documents
- Unlimited textbook solutions
- 24/7 expert homework help