Speaking for the Silenced: Medical Exploitation and Power Dynamics in Rebecca Skloot’s The Immortal Life of Henrietta Lacks
https://doi.org/10.5281/zenodo.12671572
Author(s): Dr. Vinaya Bhaskaran
DOI: https://doi.org/10.5281/zenodo.12671572
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Volume 15 | Issue 3 | June 2024
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Speaking for the Silenced: Medical Exploitation and Power Dynamics in
Rebecca Skloot’s The Immortal Life of Henrietta Lacks
Dr. Vinaya Bhaskaran
Assistant Professor,
PG Department of English,
NSS College, Manjeri,
Malappuram, Kerala.
Article History: Submitted-24/05/2024, Revised-20/06/2024, Accepted-22/06/2024, Published-30/06/2024.
Abstract:
This article examines Rebecca Skloot’s The Immortal Life of Henrietta Lacks through
the lens of medical humanities. Beyond a traditional medical biography, Skloot’s work weaves
a narrative tapestry that intertwines scientific discovery with profound ethical dilemmas and
the personal stories of those impacted by Henrietta Lacks’ legacy. The article explores Skloot’s
contribution to critical discussions surrounding informed consent, patient autonomy, and the
complex interplay of race and medicine. By analysing the ethical quagmire surrounding the
harvesting of Lacks’ HeLa cells, the article sheds light on the historical exploitation of Black
bodies in medical research and the ongoing need for equity and justice within the healthcare
system. Drawing on interdisciplinary perspectives from literature, bioethics, and medicine, the
article argues for the critical role of narrative-based approaches in medical education and
practice. Integrating these narratives fosters empathy and ethical reflection among healthcare
professionals, ultimately promoting a more holistic approach to patient care.
Keywords: medical humanities, medicine, consent, race, gender, ethics, patient autonomy.
In the liminal space between science and storytelling lies Rebecca Skloot’s The
Immortal Life of Henrietta Lacks, a work that transcends mere biography. It is a poignant
symphony of voices, a chorus that sings of a life tragically cut short yet endlessly replicated
within the realm of scientific discovery. Henrietta Lacks, a Black woman diagnosed with
cervical cancer in 1951, unwittingly became a medical marvel. Her HeLa cells, harvested
without her knowledge or consent, have revolutionized medical research, yet her story
remained shrouded in obscurity. Skloot, with the meticulous attention of a historian and the
empathy of a chronicler of the human experience, embarks on a quest to illuminate the life
behind the anonymous initials “HeLa.” This is not merely a scientific saga; it is a meditation
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on race, bioethics, and the enduring legacy of a woman whose cells continue to shape the
contours of modern medicine. Skloot’s evocative narrative confront the complexities of
scientific progress, the ethical dilemmas embedded within medical practice, and the enduring
power of a single life to impact the trajectory of human health.
Skloot employs a narrative non-fiction style to recount Henrietta Lacks’ story, weaving
together multiple timelines, perspectives, and thematic threads. Narrative theory can be applied
to analyse the structure, point of view, and narrative techniques used by Skloot to engage
readers and convey meaning. This includes examining the role of voice, chronology, and the
interplay between personal anecdotes and scientific exposition. Skloot’s narrative technique
incorporates multiple voices and perspectives, creating a dialogic interplay between Henrietta
Lacks’ personal story, scientific discourse, and the experiences of her family members. Skloot
navigates between different narrative levels as explained by Gerard Genette, intertwining
Henrietta’s biography with the broader history of medical ethics, creating a multi-layered
narrative structure that invites readers to critically engage with the complexities of the story. In
early chapters Skloot uses interviews with Henrietta’s family members, particularly her
daughter Deborah, to piece together Henrietta’s life before and after her cancer diagnosis. This
creates a personal narrative that humanizes Henrietta beyond just the source of HeLa cells. The
third chapter titled “The Stuff of Life” dives into the scientific world, explaining complex
concepts like cell cultures and their importance in medical research. The language shifts to a
more technical tone, highlighting the scientific significance of HeLa cells. Throughout the
book, Skloot incorporates quotes from researchers and doctors who worked with HeLa cells.
This provides an insider’s perspective on the scientific journey and discoveries enabled by these
cells. The chapter “The HeLa Business” focuses on Deborah’s journey of understanding the
impact of her mother’s cells. It delves into the confusion, frustration, and eventually, a sense of
pride experienced by the Lacks family. Skloot interviews various members of Henrietta’s
family, including her children, cousins, and niece. This allows for diverse perspectives on
Henrietta’s life and the impact of HeLa cells on their lives. This interplay of voices creates a
dynamic narrative that goes beyond a traditional biography. It weaves together the human story
of Henrietta and her family with the scientific advancements made possible by HeLa cells.
Many chapters begin with quotes from various individuals, including Henrietta’s family
members, doctors, and researchers. This sets the stage for the diverse voices that will shape the
narrative. Skloot frequently shifts the focus between the Lacks family’s experiences, historical
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context of medical research, and scientific developments surrounding HeLa cells. This creates
a sense of dialogue between these different perspectives.
At the heart of The Immortal Life of Henrietta Lacks lies the ethical dilemma
surrounding the use of Henrietta’s cells, known as HeLa cells, without her knowledge or
consent. Skloot meticulously traces the journey of these cells from Henrietta’s cervix to
laboratories around the world, highlighting the lack of recognition and compensation afforded
to Henrietta and her family. “Henrietta Lacks, the woman who had unknowingly given life to
the most important cell line in medical history, remained an anonymous shadow” (Skloot, 15).
This narrative serves as a powerful indictment of the exploitation of marginalized communities
in medical research and underscores the importance of informed consent and respect for patient
autonomy. “HeLa cells were shipped to researchers all over the world—Texas, California,
England, France, Australia—in little glass vials packed in dry ice” (24). Statements like these
follows in lines like “HeLa cells had become a scientific workhorse. They were helping
researchers unlock the mysteries of viruses, cancer, radiation, and genetics” (30). Henrietta
Lacks’ story raises critical questions about the extent to which patients are informed and
empowered to make decisions about their own healthcare. “No one had asked Henrietta’s
permission to take her cells, let alone explained what they planned to do with them” (25).
Skloot’s exploration of Henrietta’s lack of agency in the use of her cells underscores the
systemic inequalities and power imbalances inherent in the healthcare system. “For decades,
the Lacks family had received no financial compensation from the sale of HeLa cells” (246).
By foregrounding Henrietta’s voice and agency within the narrative, Skloot advocates for
greater transparency, communication, and respect for patient autonomy in medical practice.
This demonstrates how Skloot’s book sheds light on the disconnect between the scientific
advancements achieved through HeLa cells and the lack of recognition or compensation given
to Henrietta and her family.
The Immortal Life of Henrietta Lacks delves into the murky depths of medical progress,
as illuminated by Stanley Cohen’s seminal concepts of medicalization and the medical gaze.
Cohen’s notion of medicalization unveils how everyday occurrences undergo a transformative
journey into the realm of medicine, a phenomenon epitomized by Henrietta’s immortalized
cells. Skloot poignantly articulates this transformation, stating, ‘HeLa cells were the first human
cells to be grown in culture,’ (2) underscoring the revolutionary nature of Henrietta’s unwitting
contribution. Yet, amidst this scientific marvel, Henrietta’s autonomy is callously disregarded,
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her body reduced to a mere vessel for scientific inquiry. Moreover, Cohen’s exploration of the
medical gaze sheds light on the way in which the medical profession perceives the human body.
Initially heralded as an objective lens, the medical gaze is revealed to be a subjective construct,
susceptible to societal influences. Skloot masterfully illustrates this phenomenon through
Henrietta’s conspicuous absence within the medical narrative. Her medical records,
meticulously detailing the properties of her immortal cells, remain conspicuously silent on the
intricacies of her life and struggles. A poignant moment arises when a nurse laments, ‘Hell, I
didn’t even know who Henrietta Lacks was,’ (4) underscoring the glaring disparity between the
reverence afforded to Henrietta’s cells and the disregard for the woman behind them. This
detachment from the human ramifications of medical progress lays bares the inherent
limitations of the medical gaze, urging a re-evaluation of its purported objectivity. By weaving
together Cohen’s conceptual framework with poignant anecdotes from Henrietta’s life, Skloot’s
narrative emerges as a potent indictment of the ethical quagmires surrounding medical research
and the entrenched power dynamics within the medical establishment. Through her incisive
critique of medicalization and the medical gaze, Skloot implores us to confront the human toll
of scientific advancement, advocating for a more holistic approach that dignifies the lived
experiences of patients. The Immortal Life of Henrietta Lacks serves as a rallying cry for ethical
introspection and a clarion call to reclaim the humanity at the heart of medical practice.
Skloot’s exploration of Henrietta Lacks’ life and legacy intersects with issues of race,
identity, and social justice. Critical race theory provides a framework for examining how racial
hierarchies and systemic inequalities manifest in the healthcare system, scientific research, and
the exploitation of marginalized communities. Analysis from this perspective can illuminate
the ways in which race shapes access to healthcare, informed consent, and the distribution of
scientific benefits and burdens.
One of the most compelling aspects of The Immortal Life of Henrietta Lacks is its
exploration of the intersectionality of race and medicine. “Henrietta’s story wasn’t simply about
an isolated mistake or a historical oddity. It was one more chapter in the long, sad legacy of
how minorities had been treated in medical research” (40). Henrietta Lacks, an African
American woman, experienced systemic racism, and discrimination within the healthcare
system, leading to mistrust and exploitation by medical professionals. “Just as black bodies had
been dissected and experimented on in the name of science for centuries, Henrietta’s cells were
now being used for good without her knowledge or consent” (79). Skloot’s portrayal of
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Henrietta’s family’s experiences highlights the enduring legacy of medical racism and the need
for greater cultural competency and sensitivity in healthcare delivery. “Henrietta was a black
woman from a poor family living in a segregated city. In the Jim Crow South, black people had
few rights, especially women” (23). This segregation is repeatedly present in the work. “Johns
Hopkins, like most hospitals in the Jim Crow South, had separate wards for black and white
patients. Black patients were often used for research without their knowledge” (22). They raise
important questions about informed consent, patient autonomy, and the ethical treatment of
marginalized communities within the medical system. “The question of who gets to decide
what happens to a person’s body after they die is a complex one, especially when it comes to
the bodies of minorities in a society with a long history of exploiting them” (399). Skloot’s
exploration of the historical context of racial discrimination in medical research and how it
intersects with Henrietta’s story is deep.
Kimberle Crenshaw’s theory of intersectionality offers a powerful lens to analyse the
unique vulnerabilities Henrietta faced due to the overlapping oppressions of race, class, and
gender. Historically, Black bodies have been disproportionately targeted for medical
experimentation, often without consent. Crenshaw’s framework highlights how Henrietta’s race
placed her at a higher risk of exploitation within the Jim Crow South medical system. Skloot
describes the segregated exam room Henrietta was led to, with clear glass walls separating it
from others. This signifies the lack of privacy and potentially, a lower standard of care
compared to the unseen white patients’ rooms (15). This segregation reflects the limited access
Black patients had to healthcare facilities and resources. The book mentions Henrietta’s
hesitation to seek medical attention for a whole year. This delay could be due to a distrust of
the medical system, which often disregarded Black patients’ concerns. Skloot doesn’t explicitly
state Henrietta’s reason, but the context suggests the possibility (15).
Socioeconomic factors significantly impact access to healthcare and information.
Henrietta’s limited education and economic vulnerability likely hindered her ability to
understand or challenge the use of her cells. Crenshaw’s theory emphasizes how class intersects
with race, further marginalizing Henrietta in the medical hierarchy. Women’s bodies have often
been objectified and controlled in medical contexts. Crenshaw’s framework reminds us that
Henrietta’s experience cannot be divorced from the broader societal context where Black
women’s voices were routinely disregarded. The book exemplifies how these factors combined
to create a unique disadvantage for Henrietta. Being a Black woman of limited means stripped
her of agency and rendered her invisible within the medical system. The lack of informed
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consent regarding HeLa cells becomes a stark illustration of the ethical failings at the
intersection of race, class, and gender. Crenshaw’s concept encourages us to consider how the
exploitation of Henrietta’s cells might disproportionately impact future generations of Black
women in medical research settings. The book calls for increased awareness of these
intersectional vulnerabilities and the need for robust informed consent practices that protect
marginalized populations. By examining the unique disadvantages Henrietta faced due to the
intersection of race, class, and gender, the book compels us to confront the ethical failings
within medical research and strive for a more just and equitable healthcare system.
Given the central role of Henrietta Lacks, a woman whose agency and autonomy were
compromised by the medical establishment, feminist theory offers a lens through which to
explore issues of gender, power, and representation. Analysis from a feminist perspective can
interrogate how gender dynamics shape healthcare practices, research ethics, and the portrayal
of women’s experiences in science and medicine. Henrietta Lacks represents the marginalized
“Other” whose agency and bodily autonomy were disregarded by the medical establishment,
prompting an examination of power dynamics, gender inequality, and reproductive justice
within healthcare. Skloot foregrounds Henrietta’s perspective and experiences, challenging
dominant narratives in science and medicine that have historically marginalized women,
particularly women of colour. Analysis from a feminist standpoint emphasizes the importance
of centering women’s voices and experiences in discussions of medical ethics and research.
Sandra Harding’s standpoint theory argues that knowledge production is situated within
social locations and experiences. Marginalized groups occupy a unique standpoint, offering
valuable insights often obscured by dominant narratives. Rebecca Skloot’s The Immortal Life
of Henrietta Lacks serves as a powerful case study for applying standpoint theory, as it
dismantles the dominant scientific narrative surrounding HeLa cells and centres the
experiences of Henrietta Lacks, a Black woman from a marginalized background. Standpoint
theory highlights the unequal power relations that silence the voices of marginalized groups.
Skloot’s work exposes how Henrietta, a Black woman in the segregated South, lacked agency
and was not informed about the use of her cells. The dominant medical establishment controlled
the narrative, prioritizing scientific progress over patient autonomy. A core aspect of standpoint
theory is giving voice to those who have been silenced. Skloot meticulously reconstructs
Henrietta’s life and the experiences of her family. This allows them to reclaim their narrative
and challenge the dominant account focused solely on scientific advancements. Standpoint
theory recognizes that knowledge is partial and shaped by one’s social location. Skloot
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acknowledges her own limitations as a white researcher. She centres the Lacks family’s
experiences while remaining mindful of the historical context of race, class, and gender in
medicine. Standpoint theory calls for transforming knowledge production by incorporating
marginalized voices. Skloot’s book challenges the traditional scientific narrative of HeLa cells.
By centering Henrietta’s story, she compels the scientific community to consider the ethical
implications of research and the importance of informed consent, particularly for marginalized
populations. Skloot’s The Immortal Life of Henrietta Lacks exemplifies the power of standpoint
theory. By giving voice to Henrietta and her family, the book challenges the dominant scientific
narrative and compels a more nuanced understanding of the ethical complexities surrounding
medical research, race, and social justice.
Harriet Washington’s Medical Apartheid can be applied to Rebecca Skloot’s The
Immortal Life of Henrietta Lacks. Washington’s book exposes the long history of medical
experimentation on Black Americans without their knowledge or consent. Skloot’s narrative
directly aligns with this, highlighting the historical context in which Henrietta’s cells were
taken. “Henrietta’s story wasn’t simply about an isolated mistake or a historical oddity. It was
one more chapter in the long, sad legacy of how minorities had been treated in medical
research.” (40) This underscores how Henrietta’s experience wasn’t an isolated event, but part
of a larger pattern of exploitation within medical research. Washington emphasizes the power
dynamics that often-prevented Black patients from giving informed consent. Skloot’s book
reinforces this by detailing the segregated healthcare system and lack of information provided
to Henrietta. “Henrietta was a black woman from a poor family living in a segregated city. In
the Jim Crow South, black people had few rights, especially women.” (23) This establishes the
context of limited agency for Black women like Henrietta, making informed consent highly
improbable. Washington critiques how the contributions of Black people to medical research
are often erased. Skloot’s book initially portrays Henrietta Lacks as an anonymous source of
HeLa cells, highlighting this very issue. “Henrietta Lacks, the woman who had unknowingly
given life to the most important cell line in medical history, remained an anonymous shadow.”
(15) This reinforces the erasure of Black voices and contributions within scientific progress.
Washington calls for a critical reassessment of ethical practices in medical research. Skloot’s
book exposes the lack of ethical consideration given to Henrietta and her right to bodily
autonomy. “Just as black bodies had been dissected and experimented on in the name of science
for centuries, Henrietta’s cells were now being used for good without her knowledge or
consent.” (79) This parallels the historical exploitation of Black bodies, raising ethical
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questions about informed consent and benefiting from the research. By applying the framework
of Medical Apartheid, Skloot’s The Immortal Life of Henrietta Lacks gains even greater
significance. The book serves as a powerful testament to the ethical failings of the past and a
call for a more just and equitable approach to medical research in the future.
Given the ethical complexities at the heart of the narrative, ethical criticism offers a
framework for evaluating the moral dimensions of Skloot’s work. This involves examining the
ethical dilemmas faced by characters, the portrayal of informed consent and medical ethics,
and the implications of scientific advancement for human rights and dignity. Ethical criticism
can also engage with broader questions about the responsibilities of authors, researchers, and
society at large in addressing ethical challenges in healthcare and biomedical research. Skloot’s
narrative prompts readers to consider ethical principles such as respect for persons, autonomy,
and justice, raising questions about the moral responsibilities of researchers, clinicians, and
institutions in medical research and patient care.
Carol Gilligan’s ethics of care focuses on the relational aspects of care and empathy
depicted in the book, emphasizing the importance of recognizing and honouring the humanity
and dignity of patients like Henrietta Lacks within medical practice and research ethics.
Through the lens of Carol Gilligan’s ethics of care, the book reveals a profound ethical failing
within the medical system – a failure to prioritize the well-being of patients, particularly those
from marginalized communities. Gilligan’s ethics of care posits that moral reasoning stems
from an inherent concern for the well-being of others and the maintenance of relationships.
Skloot’s narrative exposes the stark absence of this care ethic in Henrietta’s case. Her doctors,
focused on scientific advancement, disregarded the importance of informed consent and a
patient-centered approach. Gilligan emphasizes the responsibility to care for those in need,
particularly the vulnerable. The medical establishment failed in this regard. Henrietta, a Black
woman from a low-income background, lacked the resources and voice to challenge the use of
her cells. The narrative highlights the ethical imperative to prioritize the well-being of
vulnerable patients, ensuring their rights and understanding. Gilligan’s framework underscores
the importance of considering the context of care. Skloot’s work sheds light on the historical
context of racial discrimination in medical research. Henrietta’s experience becomes a
disturbing illustration of how the ethics of care were systematically disregarded towards Black
patients. The narrative extends beyond Henrietta, incorporating the experiences of her family.
Their struggle to understand the use of HeLa cells and the lack of recognition or compensation
reflects the broader ethical failing of the medical system to consider the ongoing impact of
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research on patients and their loved ones. Gilligan’s framework encourages a shift towards a
more relational and caring approach within medical ethics. Skloot’s book serves as a call to
action, urging the medical community to prioritize informed consent, patient well-being, and a
more equitable distribution of the benefits derived from medical research, particularly for
populations historically marginalized and exploited in healthcare settings.
Postcolonial theory can also be applied to the text to analyse the legacy of colonialism,
imperialism, and cultural hegemony within the context of medical research and healthcare.
Skloot’s examination of Henrietta Lacks’ cells as commodities, extracted without consent or
compensation, raises questions about the exploitation of marginalized communities by Western
institutions. Analysis from a postcolonial perspective can explore issues of agency, cultural
imperialism, and resistance in the face of scientific exploitation and medical racism. Skloot’s
examination of the exploitation of Henrietta Lacks’ cells within the context of Western
biomedical research raises questions about cultural imperialism, scientific colonialism, and the
legacy of exploitation and erasure of marginalized communities in medical history. Skloot
critiques the dominance of Western biomedical research, implying that it often disregards the
knowledge systems and ethical considerations of other cultures. “HeLa cells had become a
scientific workhorse for a culture that hadn’t even asked permission to take them” (31). This
suggests a disregard for Henrietta’s cultural background and her right to control her own body.
Skloot’s work parallels the historical exploitation of resources from colonized countries. HeLa
cells, a valuable scientific resource, were derived from Henrietta without her knowledge or
consent. “Just as black bodies had been dissected and experimented on in the name of science
for centuries, Henrietta’s cells were now being used for good without her knowledge or
consent” (79). This draws a direct comparison between the historical exploitation of Black
bodies in research and the use of HeLa cells. Skloot highlights how Henrietta’s story, and by
extension the stories of many from marginalized communities, are often erased from the
narrative of scientific progress. “Henrietta Lacks, the woman who had unknowingly given life
to the most important cell line in medical history, remained an anonymous shadow” (15). This
exemplifies how Henrietta’s contribution was initially invisible within the scientific
community. The chapter titled “The Colored Girl” explores the historical context of racial
discrimination in medical research, particularly towards Black women. The book documents
the struggles of Henrietta’s family to understand the significance of HeLa cells and the lack of
recognition they received. This reflects the broader issue of marginalization within the medical
system. Analysis from a postcolonial perspective explores how Henrietta Lacks’ story
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embodies hybrid identities and resistance to colonial domination, highlighting the agency and
resilience of individuals and communities impacted by scientific exploitation and medical
racism.
Skloot’s The Immortal Life of Henrietta Lacks transcends the sterile realm of scientific
exploration, emerging as a poignant symphony of ethics, race, and the enduring power of
human connection. This work offers valuable lessons for medical education and practice,
emphasizing the importance of empathy, cultural humility, and ethical reflection in patient care.
By integrating narratives like Henrietta’s into medical curricula, educators can foster a deeper
understanding of the social, cultural, and historical contexts shaping health disparities and
patient experiences. Furthermore, Skloot’s work underscores the need for policies and practices
that prioritize patient rights, informed consent, and equitable access to healthcare resources.
By delving into the ethical quagmire surrounding HeLa cells, Skloot compels us to confront
the historical shadows cast upon medical progress. Through the lens of medical humanities,
Skloot’s work transcends mere biography, weaving a tapestry of human stories that resonate
with profound empathy. Integrating these narratives into medical education fosters not just
technical expertise, but ethical awareness and a profound appreciation for the human
experience that lies at the very heart of the healing arts. Ultimately, Skloot’s poignant
exploration reminds us that scientific progress thrives in tandem with ethical responsibility,
and that the stories we carry within us, like the immortal legacy of Henrietta Lacks, hold the
power to illuminate a more just and compassionate path for medicine.
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Crenshaw, Kimberle. “Demarginalizing the Intersection of Race and Sex: A Black Feminist
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Gilligan, Carol. In a Different Voice: Psychological Theory and Women’s Development.
Harvard University Press, 1982.
Harding, Sandra. The Science Question in Feminism. Cornell University Press, 1986.
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Skloot, Rebecca. The Immortal Life of Henrietta Lacks. Crown Publishing Group, 2010.
Washington, Harriet A. Medical Apartheid: The Dark History of Medical Experimentation on
Black Americans from Colonial Times to the Present. 1st Anchor Books (Broadway Books) ed.,
New York, Anchor Books, 2008.
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Dr. Vinaya Bhaskaran