The Immortal Life of Henrietta Lacks
Author:
Rebecca Skloot
Introduction
“The
Immortal life of Henrietta Lacks” is a book written by Rebecca Skloot, a
teacher, journalist and author, published by Crown Publishers in United States
in 2010. It was on the New York Times bestseller list for six years. This book has
three major parts - life, death and immortality, 38 chapters and 305 pages. In
the book, the author tells the story of a woman named Henrietta Lacks who was
diagnosed with cervical cancer, how her biopsy samples were taken without
consent, and how the cells from her biopsy became first immortal human cell and
breakthrough in biomedical science. Skloot blends ethics, progress in
biomedical science, and exploitation of African American in biomedical research
in the 20th century in her book.
Summary
The
first part of the book titled “Life” talked about how the author contacted
Henrietta’s family, childhood and family life of Henrietta, diagnosis of
cervical cancer, discovery of HeLa Cells and importance of HeLa Cell’s in
medical research. Rebecca Skloot first learned about HeLa cells and Henrietta
when she was 16 years in biology class that triggered her curiosity which
eventually motivated her to write a book. In 1999, Skloot contacted Dr. Pattillo
who connected her with Henrietta’s daughter Deborah. Skloot explored Henrietta’s
life through conversations with her family and relatives.
Henrietta
Lacks was born in Roanoke, Virginia in 1920. She lived with her parents and
eight older siblings before mother’s death. She was brought up along with her cousin,
Day, by her grandfather and later she got married to Day. The couple used to
work on a tobacco farm and had faced a tough childhood full of poverty and
hardship. Later, they moved to Baltimore for better opportunities. She gave
birth to five children: Lawrence, Elsie, Sonny, Deborah and Joe.
In
1951, Henrietta Lacks was diagnosed with cervical cancer at Johns Hopkins
Hospital. Dr. Lawrence operated on Henrietta and took pieces of tissue from the
tumor site and healthy cervix without informing her. Dr. George Grey and his team
were struggling to grow human cells in their lab. Henrietta’s biopsy became a
turning point resulting in growth of the first immortal human cells, HeLa cells
in their laboratory. The HeLa cells became one of the best discoveries that helped
scientists for development of polio vaccine, advancement in AIDS research,
cancer research, genetics and in-vitro fertilization.
The
second part of the book titled “Death” discusses about death of Henrietta,
autopsy and collection of more cell samples, rise of HeLa cells in biomedical
research, and the ethical dilemma of consent. Despite of radium treatment, Henrietta’s
cancer spread rapidly, and she died in her young age. David reluctantly agreed
to have an autopsy to collect biopsy. Though Henrietta was grave, her cells
revolutionized biomedical research. HeLa cells were shipped and used in biomedical
laboratories globally to study diseases. HeLa cells were taken to earth’s orbit
to study the effect of zero-gravity in cell replication. National cancer
institute used them to discover cancer drugs. Scientists developed a genetic
test to identify cell culture contamination and even fused HeLa cells with
animal cells. However, biomedical science was ignoring the lady behind the HeLa
cells and her family.
The
third part of the book titled “Immortality” talked about family knowing about
the HeLa Cells, Deborah’s quest for answers, legal and ethical issues around
HeLa, and recognition of Henrietta’s contribution. In the early 1970s, scientists
wanted to study genetic makeup of HeLa cells which led them to contact
Henrietta’s family to obtain blood samples from her children without clearly
informing them about the purpose behind it. Michael Gold publishes Henrietta’s
medical records in an article, and he writes about HeLa cells that violates the
Lacks family’s privacy. Henrietta’s children were confused and upset when they knew
that their mother’s cells were alive and being revolutionizing the research. They
struggled hard to understand the scientific implications of HeLa cells and were
highly concerned about the exploitation of her mother’s body and the lack of
recognition or compensation for the family.
Despite
the controversies regarding ethics of using HeLa cells, the scientific
community viewed HeLa cells as an important tool for revolutionizing biomedical
science. Later, the story of Henrietta Lacks gained greater attention, with
researchers, activists, and writers advocating for recognition of her
contributions to science. Finally, people became aware of woman behind HeLa
cells, and efforts were made to honor Henrietta and her family’s legacy.
Evaluations
and conclusions
Skloot
in her book highlighted exploitation of African American in medical research,
ethical issues related to informed consent, and commercialization of biological
materials without compensation to individuals and families as the major thesis.
She illustrated exploitation of African American with examples like collection
of blood samples without informing Lacks family, Tuskegee syphilis study and treatment
in colored wards and operation theater. In my opinion, exploitation- including
performing research without informed consent or lack of compensation for using
biological materials in research - results from power imbalance between
participants and researcher and perceiving vulnerable people as subjects rather
than human beings. Exploitation of research participants can erode public trust
towards the scientific community leading to long-term impact on the research
and ultimately humans.
The
best thing I liked about this book is that it provoked discussion among public
and scientific communities about ethics and informed consent, which is
evidenced through a content analysis of the reviews and media articles on the
book. Research showed that informed consent theme dominated the media
discussion accounting 39.2% featuring the theme as major theme and 44.8%
emphasizing as minor focus [2].
Skloot
carefully presents the emotions like anger, confusion and pride experienced by
the dysfunctional family of Henrietta when they learned about live HeLa cell
and companies making profits from their mothers’ cells. In my opinion, powerless
vulnerable people like Lack’s family often struggle to raise voice against
those who exploited them even when they have intense anger. This book serves as
an important tool to raise awareness about exploitation and their impact, and
informed consent among public and scientific society and helped in the
recognition of Henrietta whose cell brought breakthrough in research, and her
families.
These
books have several strengths. First, the author clearly describes what happened
in biomedical research in the 20th century in very simple easily understandable
words. Second, this book provokes discussion on medical ethics, informed
consent, racial exploitation and commercialization of biological materials,
which are the most needed arena to be considered in the field of biomedical
research. Third, this book clearly captured the anger, pride and feelings among
Henrietta’s children when they knew that their mother’s cells were alive. Lastly,
this book is the product of hard work and in-depth research of the author to
dig story of lady behind the immortal cells. However, there are some weaknesses
within this book. First, this book has complex structure where readers must go
to different time frame while going through each chapter of the book which
makes it little complicated to grasp the story. Second, it is challenging for
readers from non-science backgrounds to understand several scientific
terminologies related to biomedical science. Third, as a reader I feel Henrietta’s
character is underdeveloped. A deeper exploration of her personality,
aspiration, relationship with husband and family, and her feeling on struggle
in a racially segregated society could have enhanced her portrayal.
In
conclusion, “The immortal life of Henrietta Lacks” explores the life of African
America woman whose cells become first immortal human cell line, and scientific
breakthroughs made with the help of HeLa cells. The book tried to question the
morality of using biological materials without consent and served as an
important tool to provoke discussion on medical ethics, informed consent,
racial exploitation and commercialization of biological materials. I would like
to recommend this book to the researchers from the biomedical field who are
more focused on the molecular level and overlooked the ethical aspect of the
research in the population level. It will help the biomedical researchers to
think beyond the laboratory, considering the ethics and potential impacts of
their work on the life of individuals and communities.
Reference
1.
Skloot R. (2010). “The Immortal Life of
Henrietta Lacks”. Crown Publishers. United States
2.
Nisbet,
M.C., Fahy, D. Bioethics in popular science: evaluating the media impact
of The Immortal Life of Henrietta Lacks on the biobank
debate. BMC Med Ethics 14, 10 (2013). https://doi.org/10.1186/1472-6939-14-10
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