The Immortality of Henrietta Lacks

For those that have been through it, losing your mother is one of the hardest things that you’ll have to face during your life. Imagine if 20 years later, someone knocks on your door and you find out a part of your mother is alive, and people have made millions from her cells when you can’t even afford basic healthcare. This was the reality for the children of Henrietta Lacks, a person whose cells have fuelled decades of research. 

Henrietta Lacks, an African American woman was diagnosed with cervical cancer shortly after the birth of her 5th child. Despite receiving treatment, she died just 9 months after her diagnosis on October 4th, 1951 at the young age of 31. Unbeknownst to her, a doctor had taken a sample of her cancerous tissue for research. At the time, this was common practice so no one thought much of it or let her family know [1]. 

What made her cells so remarkable was that for the first time in history, doctors could keep the cells dividing infinitely without them dying after a few generations. Dr Gey, the scientist that discovered the cell line named them HeLa using the first two letters of Lack’s first and last name [2]. 

Once this cell line was discovered, it became immensely popular in its field as it allowed to further research in developing vaccines and better understanding of virology as scientists no longer had to worry about having a viable cell line to experiment with. As the cell line became infamous, people began to ask questions as to who the cells had been taken from. Originally some people were told that they came from a Helen Lane or Helen Larson until the cell’s true identity was unmasked [3]. 

Despite all the attention on it from the medical community, Lack’s family had no idea that her cells were being used. No one had ever informed them and they wouldn’t find out for another 22 years. During this time, companies had made billions from the cells and her family didn’t receive a penny.  When they did receive a call from John Hopkins hospital in the 1970’s, they were misled into believing that they had to be tested for cancer whereas the doctors really just wanted more samples for testing. Their samples were used without consent and the family never received the test results or were followed up with. This is yet another example of how the family was marginalized and disrespected by the medical community.

Many critics says that some of the leading factors in this were the family’s ethnicity and socioeconomic status. Another example of marginalization of black people in the medical community is the Tuskegee syphilis study carried out between 1932 and 1972. Scientists observed the progression of symptoms caused by syphilis in African American men. Even though an effective cure, penicillin was found in 1947, the men were left untreated and died slowly [1]. Today, medical studies now require informed consent. They also require that the patient’s identity be kept confidential, so a cell line discovered today would never follow the same naming convention as HeLa cells.

History would repeat itself in 2013 when German scientists mapped out the full genome of the HeLa cell line and released them onto a public database without consulting the family.  In order to rectify the issue and to include the family as a part of the conversation, an agreement was reached between the family and the National Institute of Health. Labs that receive NIH funding would now have to apply to have access to the genome and the approving committee consists of family members. After years of the medical community abusing their privacy, this is a step in the right direction that will help to rectify the issue and protect the family’s privacy while allowing for further research [2].  

To learn more about how the cell line furthered research and the questions about ethical research it raised, be sure to check out Rebecca Skloot’s book, The Immortal Life of Henrietta Lacks.

[1] R. McKie, “Henrietta Lacks’s cells were priceless, but her family can’t afford a hospital”, the Guardian, 2017. [Online]. Available: https://www.theguardian.com/world/2010/apr/04/henrietta-lacks-cancer-cells. [Accessed: 27- Aug- 2017].

[2] C. Stephanie Smith, “Family finally has say on HeLa cells’ destiny – CNN”, CNN, 2017. [Online]. Available: http://www.cnn.com/2013/08/07/health/henrietta-lacks-genetic-destiny/index.html. [Accessed: 27- Aug- 2017].

[3] “5 important ways Henrietta Lacks changed medical science”, STAT, 2017. [Online]. Available: https://www.statnews.com/2017/04/14/henrietta-lacks-hela-cells-science/. [Accessed: 27- Aug- 2017].