The Immortal life of Henrietta Lacks

​The Immortal Life of Henrietta Lacks
Author:  Rebecca Skloot
ISBN:  978-1-4000-5218-9
 
APA Style Citation
Skloot, R. (2010).  The immortal life of Henrietta Lacks. New York, NY: Random House.
 
Buy This Book
https://www.amazon.com/Immortal-Life-Henrietta-Lacks/dp/1400052181
 

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Book Description
      Henrietta Lacks was a woman from Baltimore, MD, who died of cervical cancer at age 31.  It is unlikely that you have heard of Henrietta but perhaps more likely that you have heard of her cells, which have been replicated for the past 70 years.  The cells were taken without her knowledge by doctors at John Hopkins Medical Center and become known as HeLa cells (a combination of letters from her first and last name).  HeLa cells are the first cells to be successfully replicated by Dr. George Gey's lab at John Hopkins University.  These cells were in high demand for conducting research on curing all types of ailments.  These were the first cells to be mass distributed, and Gey sent these cells to any researcher interested in working with live cells. HeLa cells were essential in creating a polio vaccine in 1954.  More recently, HeLa cells have been used in research on HIV, cancer, and gene mapping, as well as countless other research studies.  Over 11,000 patents are related to research completed using HeLa cells.
        While Henrietta's cells have gone on to do much good in the field of science, she never gave consent or even knew that these cells were removed from her cervix.  She went to the free clinic at John Hopkins University, which was founded with the intent of serving community members who could not afford to pay for medical treatment.  Many of those who sought treatment, including Henrietta, were African-American, and many in the community were already suspicius about the research done at John Hopkins University.  There were rumors that researchers would steal African-Americans off the street in the dead of night to conduct research much like that done at the Tuskegee Institute.  
       Henrietta's family never knew that her cells had been replicated until they were contacted years later. HeLa cells were dividing so quickly that they were invading other cells samples.  In order to identify if there were HeLa cells in a cell culture, researchers tried to gather blood samples from Henrietta's children and grandchildren. In addition to being skeptical about John Hopkins University's intentions, the family was irate that their mother's cells had been replicated without their knowledge or permission. Henrietta's family was living in near poverty, and while they were pleased about all the benefits that emerged from HeLa cells research, they were upset about the lack of transparency from John Hopkins.  They were also upset that people were profiting off of their mother's cells, but they had never seen a dime of profit.  
         At the time that Henrietta's cells were taken, it was not necessary to get consent or permission to take cell samples. While Gey originally gave the cells away for free, major companies that distributed HeLa cell samples had been selling cells for about $250 per vial since that time. 
          The moral and monetary issue around taking and selling people's cells is still somewhat unclear.  While laws have changed, and today consent forms are the norm, there is still a question of what researchers can do with biopsied cells that often remain for years refrigerated in labs or hospitals. In 1976, John Moore was diagnosed with a unique type of leukemia in his spleen. Moore signed a consent form that the hospital could dispose of any tissue by cremation.  He kept seeing his doctor for follow up treatments but later refused to sign over all rights to his bone marrow, blood, and semen to the University of California. His doctor had filed for a patent on Moore's cells without telling him in order to research this unique type of leukemia. The doctor had made agreements with biotech companies that would be worth $3.5 million. Moore tried to sue to override the patent and gain control over his biological information, but the Supreme Court of California decided ultimately once the tissue left the body with or without consent, any claim by the owner vanishes. In another case from the 1970s, a man with hepatitis B was able to sell his blood serum for $10 per milliliter, and drug companies bought this as quickly as he could produce the product. Many researchers believe that asking for permission and granting owners the rights of any part of their body will hold up the scientific progress as people will hold onto their cells waiting for the highest potential buyer. Also, as in the case of HeLa, the cells are used in so many places and mixed with other cell cultures that it would be quite the challenge to determine what cells contributed and in what percentage to the solution of a research problem cure for a disease. On the other hand, patients' rights advocates argue that people should have the right to determine what happens to their cells even after they leave their body.
           Henrietta's family and author Rebecca Skloot intend to make sure that Henrietta Lacks will not be forgotten and that her legacy will live on while her cells continue to help researchers find many solutions or vaccines to diseases.
 
Other Related Resources
Author's website
http://rebeccaskloot.com
Henrietta Lacks Foundation
http://henriettalacksfoundation.org
Movie Trailer for the HBO film 
https://www.youtube.com/watch?v=X-jxEX1XQpY
John Hopkins Medicine:  The legacy of Henrietta Lacks
https://www.hopkinsmedicine.org/henriettalacks/
Nature:  Henrietta Lacks:  Science must right a historical wrong
https://www.nature.com/articles/d41586-020-02494-z
Smithsonian Magazine: Cracking the Code of the Human Genome
https://www.smithsonianmag.com/science-nature/henrietta-lacks-immortal-cells-6421299/
NPR Author Interview: Henrietta Lacks a donor's immortal legacy
https://www.npr.org/2010/02/02/123232331/henrietta-lacks-a-donors-immortal-legacy
New Scientist:  We must learn from the story of Henrietta lacks
https://www.newscientist.com/article/2250449-genetic-privacy-we-must-learn-from-the-story-of-henrietta-lacks/
 
Psychological Concepts and Figures
Dementia
DNA
Epilepsy
Genotype
HeLa cells
Human genome project
Phenotype
Pneumoencephalography
Stem cells
X-rays