We must not see any person as an abstraction.
Instead, we must see in every person a universe with its own secrets,
with its own treasures, with its own sources of anguish
and with some measure of triumph.
-Elie Wiesel
From the Nazi Doctors and the Nuremberg Code
THE LEGACY OF HENRIETTA LACKS
Ms. Skloot is a science writer, who met the Lacks family, while investigating the background of
HeLa Cells. She helped the family, won their trust and had many conversations with them. She
worked for a whole decade with the Lacks family and came out with a complete and true account
of Henrietta Lacks life story. Her book 'The Immortal Life of Henrietta Lacks' is an honest and
moving story of the Legacy of Henrietta Lacks, her life, death and immortality.
Henrietta Lacks was an African American Virginia tobacco farmer who migrated to Baltimore, a
mother of five, who died at the young age of 30 in 1951 due to cervical cancer.
She was treated at John Hopkins Hospital, by Doctor George Gey. Dr. Gey treated Henrietta for
cervical cancer using the standard treatment at the time. During this treatment Dr. Gey took
samples of her cancerous cells. Neither Henrietta nor her family gave permission to harvest the
cells, at that time, permission was not required. Henrietta’s cells did something that no other
cells had done before they reproduced an entire generation every 24 hours and they have never
stopped. Most people have never heard of Henrietta Lacks, but her cells (commonly known as
HeLa cells) were commercialized and have been used for over 63 years to help save lives. They
have helped medical scientists discover the nature of various diseases and also helped in producing
vaccines and medicines for polio, cancer, fertility and much more.
The legacy of Henrietta Lacks is not just a story that gives inspiration but also raises questions on
various matters related to medicine, race, and ethics in research. Henrietta’s cells were harvested
in 1951 but her family did not discover this and the impact that it made on the scientific
community, until 1973. Since the discovery of the HeLa cells they have been bought and sold for
millions, yet Henrietta’s family could never afford consistent health insurance despite suffering
from chronic illnesses.
Although at the time (1951) there were no laws against taking the cells, the following questions are
relevant. Was it right for doctors to take Henrietta’s cells without her consent? Should her family
be compensated when the cells were extensively used for various medical discoveries? What impact
will the disclosure of the family’s medical records have on them?
As a result of this book many articles, questions, and concerns have been raised regarding the
ethics of scientific research as they relate to the HeLa cell. To date, HeLa cells have been named in
over 70,000 research papers.
In March 2013, the rights and privacy of the Lacks family were formally addressed after German
researchers published the DNA code, or genome, of a strain of HeLa cells on a public database,
without consulting the family. The action was not illegal, however, the fall out resulting from the
breach of privacy prompted action by the National Institute of Health (NIH). For the first time it
was decided that before any NIH-funded research on HeLa cells can be published, it needed to be
approved by a board that included two Lacks family members.
In August 2013, an agreement by the family and the National Institute of Health was announced
that give the family some control over access to the cell’s DNA code and promise of
acknowledgement in scientific papers. In addition two family members will join a six member
committee that will control access to the HeLa cells.
Ms. Skloot established the Henrietta Lacks Foundation, some of the proceeds from her book are
being donated to the foundation. Visit HenriettaLacksFoundation.org for more information.
Alan Ball along with HBO team and Oprah Winfrey's Harpo Films combined together to make a
film based on this book. The book is also being translated into twenty five languages.
This book pays tribute to the life of Henrietta Lacks. It helps us to recall the qualities in
Henrietta that made her family love her. It helps us give thanks for the contribution that she
made upon the lives of others. It provides the truth of her legacy and the impact that it had on the
scientific community.