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Henrietta Lacks: Medical Ethics in History

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by

Emma Balkin

on 4 September 2014

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Transcript of Henrietta Lacks: Medical Ethics in History

The Lacks Family
Henrietta Lacks
Cell Cloning
HeLa cells were the first cells in history to be successfully cloned. Their cloning in 1955 at the University of Colorado allowed researchers to create millions of identical cells with specific properties critical to research.
Polio Vaccine
In the mid-1950's, researcher Jonas Salk used the HeLa cell line to test a new vaccine he was developing. That vaccine was for Polio, a disease that was affecting hundreds of thousands of people a year. The vaccine has been effective in almost completely eradicating the disease.
Key People
HeLa Cells in Research
The Immortal Life of Henrietta Lacks
The year is 1951, and a young Baltimore woman lays dying in Johns Hopkins hospital of cervical cancer. That same year...
The Beginning of Immortality
As we move into an era where
The Big Question
Tissue Collection
Genetic Tracing
Mass Data Sharing in the Medical Field
And
And
are becoming increasingly more common, what can we learn from Henrietta Lack's life and death in terms of the effects of privacy violation on individuals and their families?
Where?
Clover, Virginia:
Childhood home of Henrietta Lacks
Baltimore, Maryland:
Johns Hopkins Hospital
Home to many members of the Lacks family
Henrietta Lacks and family move to Turner's Station
Through Life and Death
Evaluating Historical Literature
Thesis
1950's
2000's
1990's-2000's
1920's
Diagnosis and Death
Henrietta goes to Johns Hopkins Hospital complaining of abdominal pain and is diagnosed with cervical cancer by gynecologist Howard Jones.
Changes in the Medical Field
Researchers are able to fuse HeLa cells with mouse cells, creating the first hybrid. Experiments like this will later confuse the Lacks family, who believe that scientists are creating "monsters".
The Book and Deborah's Journey
Rebecca Skloot hears about Henrietta Lacks in a community college biology class, and becomes curious about her life and family. She later decides to write a book about the topic.
Another Privacy Violation
Henrietta's genome is sequenced and published online without consent from her family.
Birth and Early Years
Marriage and Family Life
Henrietta and Day have their first child, Lawrence, together. Henrietta is 14 at the time.
Portland, Oregon:
Childhood home of author Rebecca Skloot
Author: Rebecca Skloot
Presentation By: Emma Balkin

At the time, the woman seemed insignificant to history. Soon, it would become clear that she would change the world...
President: Harry S. Truman
Korean War
Twenty-Second Amendment is ratified
Premiere of
I Love Lucy

In Kansas an African American man sues for his daughter's right to attend a white only school near their home
1930's-1940's

George Gey and Mary Kubicek
What He Looked Like Then...
Hello, my name is George Gey. I was always fascinated by science, and received a degree from and taught zoology at University of Pittsburgh before getting married and moving to Baltimore. There, I started the Tissue Culture Laboratory at Johns Hopkins University. When I became ill with pancreatic cancer, I wanted doctors to take samples of my cells, but they refused, which infuriates me!
Hello, I'm Mary Kubicek. I am one of George Gey's lab assistants. I cultured the cells taken from Henrietta's tumor.
Cells should be exposed to the environment in increments during the growth process!

I'm David Lacks, Henrietta's cousin and husband.
My name is Lawrence, I'm the oldest of Henrietta's children.
I'm Elsie Lacks. I was developmentally delayed, and later I was institutionalized at the Crownsville mental hospital.
My name is Deborah Lacks, but most people call me Dale. I was very young when my mother died, and I took a particular interest in learning about her story and the story of my sister Elsie. Finding out what happened to my mothers cells was very stressful, and it was very hard for me to understand the medical terms and processes that they were used for.
I'm Sonny, Henrietta's third child.
I'm Zakariyya. I was born only a few months before my mothers death. My mother died, and I was forced to live with relatives Galen and Ethel. Ethel beat me and punished me almost every day. I remain very angry about what happened to my mothers cells and want money from Hopkins.
Henrietta Lacks was born Loretta Pleasant on August 1, in Roanoke, Virginia.

Strengths
Weaknesses
Four years later, her mother passed away, leading Henrietta to be sent to live with her grandfather.
She grew up sharing a room with her cousin, David Lacks, in a log cabin on a former slave plantation.
Novel alternates between telling Henrietta's personal story and explaining concurrent events in medical history
Author includes strong afterword explaining legal/ethical aspects
Written within the past 5 years, allowing modern developments and the reaction of family to play out throughout story
Visuals are included to highlight important people, places, etc.
Not enough historical context is provided in regards to events not related to science or medicine
The book loses steam in the second half, with much of the information becoming unnecessary and too much focus spent on the authors struggle to communicate with the family
The Immortal Life of Henrietta Lacks highlights that the interpretation of historical events is highly individual, and circumstance and position in terms of the event is what determines opinion.
Henrietta gives birth to her second child, Elsie.
Henrietta and Day are married.
Cell Roller Drum
Family: Personal/Emotional Reaction
Vs.
Scientists: Logical/Defensive Reaction
Henrietta and Day move to Baltimore after a cousin tells them about jobs in the steel industry. In Baltimore, Henrietta gives birth to three more children; David Jr., Deborah, and Joe (Zakiryya)
Tissue samples from Henrietta's cervix are removed during subsequent radiation treatments without her knowledge.
Henrietta dies of cancer at Johns Hopkins on October 4th, at only 31 years of age. Her husband Day eventually signs papers consenting to an autopsy.
HeLa cells are easily infected by polio virus and can be mass produced and used to test vaccines!
A mass production factory for HeLa cells was opened by the NFIP in 1953.
1960's-1980's
The "HeLa bomb" is dropped when Stanley Gartler announces his belief that many cell lines have been cotaminated by HeLa.
The Lacks family learns that Henrietta's cells are still alive, causing them confusion and anger.
John Moore's case over tissue rights goes to the supreme court, where he is ruled against.
After gaining the trust of Deborah, Rebecca speaks with many family members to hear their stories. Rebecca and Deborah travel to Clover and Crownsville to investigate family history.
Deborah dies of a heart attack. That same year, The Immortal Life of Henrietta Lacks is published.
The Lacks family reaches an agreement with the NIH, which aims to protect the families privacy by requiring that genome information is only released for pre-approved research.
Henrietta Lacks was, among many things:
a wife
mother of five
friend to many
Diagnosed at 31 with cervical cancer
A sample of her cells was taken without her permission during a radiation treatment at Johns Hopkins
Until recently, remembered only for her cells
Book opens up conversation about her life and family
Cancer
AIDS
Gene Mapping
Within these general groups, each individual sees the information a different way as a product of their experiences and the information they understand to be true. For example, the author has a very different perspective than a reader, who likely has a very different prospective from yet another reader.

Weighing the evidence that shows the psychological effects of privacy violation on Henrietta's family with the evidence that shows that tissue collection and research is critical to medical advancement, we must reach the conclusion that more privacy laws must be created to protect identity while still allowing researchers to have access to information within reasonable limits.
A critical piece of the puzzle is the agreement reached between the NIH and the Lacks family. Because the agreement allows for pre-approved researchers to have access to Henrietta's genome sequencing, it protects the privacy of the families medical information from employers, friends, and the average person on the internet while still allowing for positive medical advancement. It is not practical to reach agreement on a case by case basis, therefore:
Today, we are able to look back on her incredible story and learn not only about medical ethics in history, but also about race, education, and the importance of family.
Henrietta's genome sequencing can reveal private medical information about her family, such as increased risk factors diseases. If public, this information could skew the viewpoint of people from friends to potential employers.
Full transcript