Expert: • Read two biographies about influential women; one featuring someone from the 1900s and the other from the 1800s. • Share five things (from each book) that you learned on The Farmgirl Connection.
Henrietta Lacks (aka HeLa) 1920-1951/Forever. From The Immortal Life of Henrietta Lacks
1951 - Henrietta's cervical cancer tumor was biopsied at Johns Hopkins. These cancer cells were the first George Gey was able to grow in culture. However, there was no protocol or precedent for informing or obtaining consent from patients to use their genetic material, raising ethical questions. Post-HIPA, publishing health information like DNA raises privacy concerns because you might get discriminated against because of genes. Relatives who share DNA might be singled out for study or discrimination, as was the case for Henrietta's family. As Henrietta's cells gained notoriety, researchers tried to throw media off by claiming HeLa stood for Helen Lane, but this anonymity came at the cost because her family was not provided with any recognition of the extent of her contribution to science.
Gey had struggled to propagate healthy cells in culture up to this point because of the Hayflick Limit which stated that cells are preprogrammed to stop replicating after 50 divisions when their telomeres become too short. However, Henrietta's exposure to viruses like HPV (which is now linked as a cause of cancer) meant her biopsied cancer cell DNA had been overwritten by the virus in a way that removed the limit.
The ability to grow human cells in culture allowed for a whole new field of medical testing. These cells could be exposed to radiation, vaccines, taken into space, etc. to observe how they reacted and expedite treatment tests. One of HeLa's early contributions was in helping Jonas Salk rapidly test a polio vaccine.
Medical ethics had some catching up to do. In trying to understand cancer, there was an interval where researchers were putting HeLa cultures into patients without their consent to see if and how these cells would multiply and if different morphologies of the cancer were truly distinct.
Learning how to culture cells in a lab became a booming industry and paved the way to culture of cells for use in IVF and cloning work. But HeLa cells were so hardy that they could also throw off some research by contaminating samples in other studies. Fortunately, HeLa also furthered furthered research in chromosome counting and mapping which eventually allowed Stanley Gartler to identify a rare gene in HeLa (G6PD-A) in cultured cell lines which claimed to be different from HeLa.
Tragically, it appears Henrietta's oldest daughter, Elsie was also involved in medical testing without consent. She was institutionalized when the family was no longer able to support her epileptic condition. The institution which took her was overcrowded, understaffed, and used patients of her profile to test pneumoencephalography, a method of taking crisp x-rays which came with side effects of seizures, vomiting, and crippling headaches lasting for two to three months after the operation. Elsie ultimately died in their care.
The two themes that continue to haunt me about this story are: 1. It is possible to be "influential" as a victim or passive bystander. Henrietta wasn't consulted about her "donation" to science, but it still had a huge impact. 2. We should take collective responsibility for human health. It will facilitate better quality research and we will not have these injustices of Henrietta's descendants scrambling to afford healthcare in spite of her contribution.
