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Running head: EQUALITY AND INJUSTICE IN HEALTHCARE Marisa McCarty 1
The Lack of Equality and Presence of Injustice in the Healthcare Industry
Marisa S. McCarty
University of Georgia
Running head: EQUALITY AND INJUSTICE IN HEALTHCARE Marisa McCarty 2
In 1951, when Henrietta Lacks went to one of the few hospitals in the United States that
would treat African Americans to have the "knot" in her cervix examined, she had no idea of the
impact she and her cells would have on science, healthcare, and research. Henrietta was
diagnosed with cervical cancer, the equivalent to a death sentence, at the time because of the lack
of knowledge regarding the cause and treatment for the disease (Hendrix, 2017). The issue in
Henrietta's case is the lack of information she and her family were given concerning the
immortal qualities of the cells from her tumor. Cases like hers and the Tuskegee Syphilis Study,
are used to reshape the standards of care for patients and participants, but only after researchers
and scientists have been able to take advantage of individuals involved. HeLa cells have
provided researchers the ability to make strides in the medical field to develop vaccines, study
effects of zero gravity and radiation without the necessity of testing human subjects. For many
years following her death, the population, including myself, only knew about the miraculous
contributions HeLa cells were allowing scientists to make to the healthcare community. It begs
the question if Henrietta Lacks was immortal or if it was just her infamous cells called HeLa that
would be immortalized in science for the rest of time. Until 2010, when the author, Rebecca
Skloot, published The Immortal Life of Henrietta Lacks, the answer was her cells. Skloot told
Henrietta's story, the struggles her family faced, and enforced that not only should the name
HeLa transcend through generations, but Henrietta Lacks should directly follow. Here we will
focus on the failures and inadequacies of the health care system including health disparities
between races as well as ethics in healthcare especially regarding informed consent and body
property.
The Lacks family suffered from the effects of the political and social atmosphere during
the twentieth century. Henrietta had few options of hospitals she could choose to be treated, and
Running head: EQUALITY AND INJUSTICE IN HEALTHCARE Marisa McCarty 3
Johns Hopkins Hospital was segregated into wards based on race. While Johns Hopkins hospital
laments that black patients and white patients received the same quality of care within the
separate wards, it is glaringly obvious this cannot be the case (Johns Hopkins Medicine). It has
been upheld through decades that medical care is considered a commodity rather than a human
right. While the many doctors who interacted with the Lacks family took advantage of their lack
of education and inadequate knowledge of the medical field, Deborah Lacks was aware of the
fact that "[her] mother was black, black poor people don't have the money to pay for it", but
"white and rich get it" (Skloot, 2010, p.280). It refers to quality medical care, and even today
there are still disparities between the majority and minority concerning health care access which
can be seen in the worse health outcomes experienced by minority groups (Tajeu et al., 2015).
It could be argued that at the time Henrietta was diagnosed with cervical cancer, there
was not a successful treatment developed and little knowledge about the disease in general, but
first, the Eva Peron case must be considered. Eva was the influential wife of Argentinean
President Juan Peron, and she was diagnosed with cervical cancer one month after Henrietta was
buried. While Eva was never told she had cervical cancer, a radical attempt to treat the disease
was performed, and George Pack, a cancer specialist from New York, flew to South American to
give Eva a hysterectomy (Hendrix, 2017). Henrietta was merely treated with radium and x-ray
therapy, which was the standard treatment at the time. The differences in these two women's
treatment highlight the disparities in health care based on social class which is still present in the
industry today. Minority groups have less access to clean resources, nutritious food, and quality
healthcare because they cannot afford it. There are fewer opportunities to pursue higher
education and work higher paying jobs that would allow socioeconomic progression for these
minorities to have equal access to healthcare. The United States follows a market justice model
Running head: EQUALITY AND INJUSTICE IN HEALTHCARE Marisa McCarty 4
of providing medical care meaning those who can afford the best care receive the best care, and
there are few quality forms of healthcare available for poor communities.
Not only were African Americans systematically unable to afford or have access health
care during the early to mid-twentieth century, but years of manipulation from white plantation
owners and maltreatment from doctors also conjured an overwhelming sense of distrust in
minority groups of the medical field. White plantation owners took advantage of African beliefs
that ghosts caused diseases and death by posing as ghosts to haunt the slaves at night while
allowing doctors to steal them away and perform medical tests on them for research (Skloot,
2010). The manipulations continued into the 1900's when Baltimore medical schools paid for
bodies to perform medical research and had black bodies from the south secretly shipped into
their northern schools which led many black residents to believe Johns Hopkins Hospital was
only built to have easy access to research subjects (Skloot, 2010). Even in studies where black
and white people are given the same health care access and doctors, black participants reported
higher rates of discrimination from healthcare professionals (Tajeu et al., 2015). When doctors
and persons in positions of power continue to mistreat and manipulate minorities, what
motivation is there available to them to trust healthcare providers and desire to get treated for
illnesses even if there is care available? Aspiring doctors and public health professionals should
be inspired by cases like Henrietta Lacks' and the numerous case studies reporting the health
inequities between the white, comfortable majority and the poor, uneducated minority to begin to
develop a better system of providing healthcare and an increased level of trust with minorities in
healthcare professionals.
The seemingly most apparent ethical issue regarding the harvesting of HeLa cells is the
lack of informed consent given by Henrietta Lacks. However, there were no laws in 1951 that
Running head: EQUALITY AND INJUSTICE IN HEALTHCARE Marisa McCarty 5
required doctors to establish consent for tissue or cell donation (Johns Hopkins Medicine). It was
not until 1981 when informed consent became required under the Common Rule regulations
(Rao, 2016). Henrietta died before there were any laws regulating tissue taking and research
practices, but the Common Rule would apply to Henrietta's descents. It states that doctors must
not be aware of the identity of the subject from which the tissue or cells are being studied, and
the subject has the right to withdraw their samples at any time during the study. Technically, her
family members could push to have HeLa cells removed research studies, but her closest family
members do not want to halt medical advancements that could potentially help save more lives
(Skloot, 2010). Her family instead wishes to have recognition of the exploitations they suffered
from various researchers and writers and for their mother to be remembered as Henrietta Lacks,
not just HeLa. The scientific and medical community can endlessly recognize HeLa cells and the
many contributions these cells made to help develop polio and HPV vaccines among other
medical advancements. People all over the world have access to HeLa cells, and all the Lackses
have left of their mother, wife, cousin, and sister "is just them [medical] records and her Bible"
(Skloot, 2010, p. 284). The law upholds that family members and donators themselves do not
have protective rights over human cells, as they are seen more as intellectual material over
physical body parts (Rao, 2016). The Lackses do not wish to remove HeLa cells from scientific
research; they only "hope Johns Hopkins Hospital and the other researchers who benefited off of
her cells would do something to honor her and make right with the family" (Skloot, 2010, p.
328).
Informed consent continued to be an ethical issue in research studies, especially
concerning minority groups. Doctors took advantage of the uneducated and weak to have
research subjects for their studies. The Tuskegee Syphilis study exemplifies the exploitation of
Running head: EQUALITY AND INJUSTICE IN HEALTHCARE Marisa McCarty 6
African Americans in the medical field. The men who were participants were not informed of the
potential risks and the implications of participating in this study. Researchers instead lured them
into partaking in the study by promising free health care and hot meals (Paul and Brookes, 2015).
Similar to the Lacks case, when the Tuskegee Syphilis study began there was not a basis formed
for informed consent. However, the doctors conducting the study could have given the men the
options of treatment instead of sentencing men who were infected to death by not treating them
at all. It is morally wrong to maintain such disregard for human life. Philosopher, William James,
and Harvard medical professor, Richard C. Cabot discussed the importance of informed consent
years before the Tuskegee study took place and Henrietta Lacks was diagnosed with cancer or
even born (Paul and Brookes, 2015). Their attempts failed which allowed for the exploitation of
minority groups within the medical field well into the twentieth century.
Some doctors have become too focused on being the pioneer of the next scientific
breakthrough that they have lost their regard for human life and privacy. The Lackses did not
want to be scrutinized in the public eye for their choices, but doctors and researchers publically
exposed their personal lives in their attempts to gain more access to the HeLa cell line. The
Lacks family had many controversial attributes as Day was Henrietta's cousin, and some of the
family members were in jail or had mental issues (Skloot, 2010). Because of these experiences,
the Lacks family was wary of outsiders and contributed to the initial difficulties the author
experienced in gaining the trust of the family. Rebecca Skloot was one of the only people whom
the Lackses interacted with who genuinely wanted to help their family and immortalize
Henrietta. Researchers and doctors only saw the advantages they could receive from HeLa cells
and the bloodline that descended from them. In the seventies, the family was made to believe
they were being tested for cancer, but in actuality, the doctors were taking their blood for further
Running head: EQUALITY AND INJUSTICE IN HEALTHCARE Marisa McCarty 7
testing into their genetics (Skloot, 2010). It is problematic that these doctors only saw these
individuals for their genetic material and failed to recognize that they were human beings who
may not want to participate in research trials. When Rebecca Skloot interviewed one of the
doctors who took blood from the other Lacks family members and informed her of all of the
injustices they had experienced, Dr. Hsu still was attempting to "go back and get some more
blood" but asked Skloot to do her bidding (Skloot, 2010, p. 190). Even after all of the
mistreatments against the Lackses were exposed including the unauthorized publication of a
photograph of Henrietta, doctors still were prioritizing their careers over the wishes of the
family.
HeLa cells have provided science with many advances that have had an enormously
positive impact on the medical research field, but it was at the expense of the Lacks family. The
injustice they experienced from the medical field by professionals and facilities is inexcusable
and highlights the incongruency in the treatment of minority groups in the field. Before Rebecca
Skloot published The Immortal Life of Henrietta Lacks, the majority of the world only knew
HeLa cells were immortal and were aiding in a massive amount of scientific research. Skloot
pushed to immortalize Henrietta Lacks and tell her story. It is vital that people be aware of the
inequities and disparities that exist in public health because this is the only way that change can
occur. Reading this novel gave me a greater understanding of the levels of healthcare provided
for majority versus minority groups. I wish to enter into the healthcare management field
because I want to be apart in ensuring every patient receives quality care from doctors.
Healthcare should not be viewed as a commodity where only the best care is available to the rich
and educated. Every person deserves the right to quality healthcare, and as future healthcare
industry professionals, we have to not only lobby for equal access to healthcare but also develop
Running head: EQUALITY AND INJUSTICE IN HEALTHCARE Marisa McCarty 8
trust within communities who have continuously been taken advantage of by politicians and
researchers. It is cases like Henrietta Lack's that influence change in the medical field. When
such failures like the ones present in her and her families treatment are exposed, doctors and
organizations are forced to make changes to right their wrongs. Just as her cells will continue to
live on through scientific research, Henrietta Lacks will now be a name that is remembered as
well thanks to the diligent work done by Rebecca Skloot.
Running head: EQUALITY AND INJUSTICE IN HEALTHCARE Marisa McCarty 9
References
Hendrix, S. (2017, April 22). When Henrietta Lacks had cervical cancer, it was a โ€˜death
sentence.โ€™ Her cells would help change that. The Washington Post. Retrieved from
https://www.washingtonpost.com/news/retropolis/wp/2017/04/22/when-henrietta-lacks-
was-diagnosed-with-cervical-cancer-it-was-a-death-sentence-her-cells-would-help-
change-that/?utm_term=.1447ad0e67da
Johns Hopkins Medicine. (n.d). The Legacy of Henrietta Lacks. Retrieved from
https://www.hopkinsmedicine.org/henriettalacks/index.html
Paul, C., & Brookes, B. (2015). The Rationalization of Unethical Research: Revisionist Accounts
of the Tuskegee Syphilis Study and the New Zealand "Unfortunate Experiment".
American Journal of Public Health, 105(10), e12-e19.
Rao, R. (2016). Informed Consent, Body Property, and Self-Sovereignty. The Journal of Law,
Medicine & Ethics: A Journal of The American Society of Law, Medicine & Ethics,
44(3), 437-444.
Skloot, R. (2010). The Immortal Life of Henrietta Lacks. New York, NY: Broadway Books.
Tajeu, G. S., Cherrington, A. L., Andreae, L., Prince, C., Holt, C. L., & Halanych, J. H. (2015).
"We'll Get to You When We Get to You": Exploring Potential Contributions of Health
Care Staff Behaviors to Patient Perceptions of Discrimination and Satisfaction. American
Journal of Public Health, 105(10), 2076-2082.

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Inequality and injustice in healthcare

  • 1. Running head: EQUALITY AND INJUSTICE IN HEALTHCARE Marisa McCarty 1 The Lack of Equality and Presence of Injustice in the Healthcare Industry Marisa S. McCarty University of Georgia
  • 2. Running head: EQUALITY AND INJUSTICE IN HEALTHCARE Marisa McCarty 2 In 1951, when Henrietta Lacks went to one of the few hospitals in the United States that would treat African Americans to have the "knot" in her cervix examined, she had no idea of the impact she and her cells would have on science, healthcare, and research. Henrietta was diagnosed with cervical cancer, the equivalent to a death sentence, at the time because of the lack of knowledge regarding the cause and treatment for the disease (Hendrix, 2017). The issue in Henrietta's case is the lack of information she and her family were given concerning the immortal qualities of the cells from her tumor. Cases like hers and the Tuskegee Syphilis Study, are used to reshape the standards of care for patients and participants, but only after researchers and scientists have been able to take advantage of individuals involved. HeLa cells have provided researchers the ability to make strides in the medical field to develop vaccines, study effects of zero gravity and radiation without the necessity of testing human subjects. For many years following her death, the population, including myself, only knew about the miraculous contributions HeLa cells were allowing scientists to make to the healthcare community. It begs the question if Henrietta Lacks was immortal or if it was just her infamous cells called HeLa that would be immortalized in science for the rest of time. Until 2010, when the author, Rebecca Skloot, published The Immortal Life of Henrietta Lacks, the answer was her cells. Skloot told Henrietta's story, the struggles her family faced, and enforced that not only should the name HeLa transcend through generations, but Henrietta Lacks should directly follow. Here we will focus on the failures and inadequacies of the health care system including health disparities between races as well as ethics in healthcare especially regarding informed consent and body property. The Lacks family suffered from the effects of the political and social atmosphere during the twentieth century. Henrietta had few options of hospitals she could choose to be treated, and
  • 3. Running head: EQUALITY AND INJUSTICE IN HEALTHCARE Marisa McCarty 3 Johns Hopkins Hospital was segregated into wards based on race. While Johns Hopkins hospital laments that black patients and white patients received the same quality of care within the separate wards, it is glaringly obvious this cannot be the case (Johns Hopkins Medicine). It has been upheld through decades that medical care is considered a commodity rather than a human right. While the many doctors who interacted with the Lacks family took advantage of their lack of education and inadequate knowledge of the medical field, Deborah Lacks was aware of the fact that "[her] mother was black, black poor people don't have the money to pay for it", but "white and rich get it" (Skloot, 2010, p.280). It refers to quality medical care, and even today there are still disparities between the majority and minority concerning health care access which can be seen in the worse health outcomes experienced by minority groups (Tajeu et al., 2015). It could be argued that at the time Henrietta was diagnosed with cervical cancer, there was not a successful treatment developed and little knowledge about the disease in general, but first, the Eva Peron case must be considered. Eva was the influential wife of Argentinean President Juan Peron, and she was diagnosed with cervical cancer one month after Henrietta was buried. While Eva was never told she had cervical cancer, a radical attempt to treat the disease was performed, and George Pack, a cancer specialist from New York, flew to South American to give Eva a hysterectomy (Hendrix, 2017). Henrietta was merely treated with radium and x-ray therapy, which was the standard treatment at the time. The differences in these two women's treatment highlight the disparities in health care based on social class which is still present in the industry today. Minority groups have less access to clean resources, nutritious food, and quality healthcare because they cannot afford it. There are fewer opportunities to pursue higher education and work higher paying jobs that would allow socioeconomic progression for these minorities to have equal access to healthcare. The United States follows a market justice model
  • 4. Running head: EQUALITY AND INJUSTICE IN HEALTHCARE Marisa McCarty 4 of providing medical care meaning those who can afford the best care receive the best care, and there are few quality forms of healthcare available for poor communities. Not only were African Americans systematically unable to afford or have access health care during the early to mid-twentieth century, but years of manipulation from white plantation owners and maltreatment from doctors also conjured an overwhelming sense of distrust in minority groups of the medical field. White plantation owners took advantage of African beliefs that ghosts caused diseases and death by posing as ghosts to haunt the slaves at night while allowing doctors to steal them away and perform medical tests on them for research (Skloot, 2010). The manipulations continued into the 1900's when Baltimore medical schools paid for bodies to perform medical research and had black bodies from the south secretly shipped into their northern schools which led many black residents to believe Johns Hopkins Hospital was only built to have easy access to research subjects (Skloot, 2010). Even in studies where black and white people are given the same health care access and doctors, black participants reported higher rates of discrimination from healthcare professionals (Tajeu et al., 2015). When doctors and persons in positions of power continue to mistreat and manipulate minorities, what motivation is there available to them to trust healthcare providers and desire to get treated for illnesses even if there is care available? Aspiring doctors and public health professionals should be inspired by cases like Henrietta Lacks' and the numerous case studies reporting the health inequities between the white, comfortable majority and the poor, uneducated minority to begin to develop a better system of providing healthcare and an increased level of trust with minorities in healthcare professionals. The seemingly most apparent ethical issue regarding the harvesting of HeLa cells is the lack of informed consent given by Henrietta Lacks. However, there were no laws in 1951 that
  • 5. Running head: EQUALITY AND INJUSTICE IN HEALTHCARE Marisa McCarty 5 required doctors to establish consent for tissue or cell donation (Johns Hopkins Medicine). It was not until 1981 when informed consent became required under the Common Rule regulations (Rao, 2016). Henrietta died before there were any laws regulating tissue taking and research practices, but the Common Rule would apply to Henrietta's descents. It states that doctors must not be aware of the identity of the subject from which the tissue or cells are being studied, and the subject has the right to withdraw their samples at any time during the study. Technically, her family members could push to have HeLa cells removed research studies, but her closest family members do not want to halt medical advancements that could potentially help save more lives (Skloot, 2010). Her family instead wishes to have recognition of the exploitations they suffered from various researchers and writers and for their mother to be remembered as Henrietta Lacks, not just HeLa. The scientific and medical community can endlessly recognize HeLa cells and the many contributions these cells made to help develop polio and HPV vaccines among other medical advancements. People all over the world have access to HeLa cells, and all the Lackses have left of their mother, wife, cousin, and sister "is just them [medical] records and her Bible" (Skloot, 2010, p. 284). The law upholds that family members and donators themselves do not have protective rights over human cells, as they are seen more as intellectual material over physical body parts (Rao, 2016). The Lackses do not wish to remove HeLa cells from scientific research; they only "hope Johns Hopkins Hospital and the other researchers who benefited off of her cells would do something to honor her and make right with the family" (Skloot, 2010, p. 328). Informed consent continued to be an ethical issue in research studies, especially concerning minority groups. Doctors took advantage of the uneducated and weak to have research subjects for their studies. The Tuskegee Syphilis study exemplifies the exploitation of
  • 6. Running head: EQUALITY AND INJUSTICE IN HEALTHCARE Marisa McCarty 6 African Americans in the medical field. The men who were participants were not informed of the potential risks and the implications of participating in this study. Researchers instead lured them into partaking in the study by promising free health care and hot meals (Paul and Brookes, 2015). Similar to the Lacks case, when the Tuskegee Syphilis study began there was not a basis formed for informed consent. However, the doctors conducting the study could have given the men the options of treatment instead of sentencing men who were infected to death by not treating them at all. It is morally wrong to maintain such disregard for human life. Philosopher, William James, and Harvard medical professor, Richard C. Cabot discussed the importance of informed consent years before the Tuskegee study took place and Henrietta Lacks was diagnosed with cancer or even born (Paul and Brookes, 2015). Their attempts failed which allowed for the exploitation of minority groups within the medical field well into the twentieth century. Some doctors have become too focused on being the pioneer of the next scientific breakthrough that they have lost their regard for human life and privacy. The Lackses did not want to be scrutinized in the public eye for their choices, but doctors and researchers publically exposed their personal lives in their attempts to gain more access to the HeLa cell line. The Lacks family had many controversial attributes as Day was Henrietta's cousin, and some of the family members were in jail or had mental issues (Skloot, 2010). Because of these experiences, the Lacks family was wary of outsiders and contributed to the initial difficulties the author experienced in gaining the trust of the family. Rebecca Skloot was one of the only people whom the Lackses interacted with who genuinely wanted to help their family and immortalize Henrietta. Researchers and doctors only saw the advantages they could receive from HeLa cells and the bloodline that descended from them. In the seventies, the family was made to believe they were being tested for cancer, but in actuality, the doctors were taking their blood for further
  • 7. Running head: EQUALITY AND INJUSTICE IN HEALTHCARE Marisa McCarty 7 testing into their genetics (Skloot, 2010). It is problematic that these doctors only saw these individuals for their genetic material and failed to recognize that they were human beings who may not want to participate in research trials. When Rebecca Skloot interviewed one of the doctors who took blood from the other Lacks family members and informed her of all of the injustices they had experienced, Dr. Hsu still was attempting to "go back and get some more blood" but asked Skloot to do her bidding (Skloot, 2010, p. 190). Even after all of the mistreatments against the Lackses were exposed including the unauthorized publication of a photograph of Henrietta, doctors still were prioritizing their careers over the wishes of the family. HeLa cells have provided science with many advances that have had an enormously positive impact on the medical research field, but it was at the expense of the Lacks family. The injustice they experienced from the medical field by professionals and facilities is inexcusable and highlights the incongruency in the treatment of minority groups in the field. Before Rebecca Skloot published The Immortal Life of Henrietta Lacks, the majority of the world only knew HeLa cells were immortal and were aiding in a massive amount of scientific research. Skloot pushed to immortalize Henrietta Lacks and tell her story. It is vital that people be aware of the inequities and disparities that exist in public health because this is the only way that change can occur. Reading this novel gave me a greater understanding of the levels of healthcare provided for majority versus minority groups. I wish to enter into the healthcare management field because I want to be apart in ensuring every patient receives quality care from doctors. Healthcare should not be viewed as a commodity where only the best care is available to the rich and educated. Every person deserves the right to quality healthcare, and as future healthcare industry professionals, we have to not only lobby for equal access to healthcare but also develop
  • 8. Running head: EQUALITY AND INJUSTICE IN HEALTHCARE Marisa McCarty 8 trust within communities who have continuously been taken advantage of by politicians and researchers. It is cases like Henrietta Lack's that influence change in the medical field. When such failures like the ones present in her and her families treatment are exposed, doctors and organizations are forced to make changes to right their wrongs. Just as her cells will continue to live on through scientific research, Henrietta Lacks will now be a name that is remembered as well thanks to the diligent work done by Rebecca Skloot.
  • 9. Running head: EQUALITY AND INJUSTICE IN HEALTHCARE Marisa McCarty 9 References Hendrix, S. (2017, April 22). When Henrietta Lacks had cervical cancer, it was a โ€˜death sentence.โ€™ Her cells would help change that. The Washington Post. Retrieved from https://www.washingtonpost.com/news/retropolis/wp/2017/04/22/when-henrietta-lacks- was-diagnosed-with-cervical-cancer-it-was-a-death-sentence-her-cells-would-help- change-that/?utm_term=.1447ad0e67da Johns Hopkins Medicine. (n.d). The Legacy of Henrietta Lacks. Retrieved from https://www.hopkinsmedicine.org/henriettalacks/index.html Paul, C., & Brookes, B. (2015). The Rationalization of Unethical Research: Revisionist Accounts of the Tuskegee Syphilis Study and the New Zealand "Unfortunate Experiment". American Journal of Public Health, 105(10), e12-e19. Rao, R. (2016). Informed Consent, Body Property, and Self-Sovereignty. The Journal of Law, Medicine & Ethics: A Journal of The American Society of Law, Medicine & Ethics, 44(3), 437-444. Skloot, R. (2010). The Immortal Life of Henrietta Lacks. New York, NY: Broadway Books. Tajeu, G. S., Cherrington, A. L., Andreae, L., Prince, C., Holt, C. L., & Halanych, J. H. (2015). "We'll Get to You When We Get to You": Exploring Potential Contributions of Health Care Staff Behaviors to Patient Perceptions of Discrimination and Satisfaction. American Journal of Public Health, 105(10), 2076-2082.