Though the HeLa Factory had good intentions to stop polio, the development of an industrial scale cell culturing facility showed how close the relationship between business and medicine truly is. The HeLa cells became scientific property, allowing Henrietta Lacks’s name to be erased with each new vial of the cell culture. After the polio testing, HeLa cells were used to study genetics, nuclear physics, cosmetics, and kick-started the cell-culture industry. What started out as one woman’s tumor cells became a money-making machine. The question of her consent was quickly forgotten, instead replaced by the question of how many HeLa cells could be grown and sold.
The research industry was thriving off of a nonconsensual donation of cells and had no intention of thanking the Lacks family for their mother’s contribution to science. While the HeLa factory was booming, Henrietta’s children were being abused and neglected by Ethel, their caretaker. Lawrence, the oldest son, was so short on money that he lied about his age to get a job. Though this helped him gain employment, it also made him eligible for the draft, leading him to be unfairly sent to war at a young age. During this time, Dr. Gey had an intense desire to keep Henrietta’s name private, so her children did not even know that their mothers’ cells were at the forefront of modern research. Was this stance actually to protect the family’s privacy, or was it yet another way that Dr. Gey found to make the HeLa cells seem less human? Was this his way of trying to make up for the lack of Henrietta’s complete consent while she was alive? It is quite clear that Henrietta was never given full information about her surgery and medical care. She did not know that the surgery would render her unable to have children and claimed that she would not have followed through with the treatment if she had known. After her death, though, doctors went to extreme lengths to obtain her husband’s consent for an autopsy. They valued Henrietta’s life only after it ended, just like Dr. Gey valued her right to privacy only after it was no longer needed. Researchers thought that understanding the exact cause of death and potentially getting a few more cell samples was more important than preserving her body in the way that her husband wanted to.
With all of the injustices that surrounded both Henrietta and her family, it is almost challenging to focus on the scientific advancements of the HeLa cells. The lack of any sort of financial compensation left the Lacks family unable to purchase health insurance, blocking them from reaching their normal functioning. Though some compensation would have been appreciated, is there really anything that could have actually remedied this situation for the Lacks family? Her children lost their mother, her husband lost his wife, and her community lost a dear friend. With all of the pain that surrounded both her cancer and death, would understanding that Henrietta’s cells were helping others have made it any easier on the Lacks family?
In her post, Jess does an excellent job of summarizing the unethical actions conducted to “protect” HeLa cells. Not only were Henrietta’s cells harvested without her knowledge, but a multi-billion dollar industry arose as a result. Researchers and privileged elites benefitted from growing the cells and making patentable discoveries, all the while Henrietta’s family largely lived in poverty. At this juncture, Jess raises an interesting point about Dr. Gey’s motivations. He claimed that he systematically distanced Henrietta from HeLa cells to protect the family’s privacy. Yet, protecting the family’s privacy necessitates guarding Henrietta’s medical history from other researchers – not from her family. After all, at least half of the genetic material the researchers were handling belonged to Henrietta’s children. Thus, information discovered about HeLa cells could disclose medical information about the family. What if the rare genetic marker mentioned in the book, G6PD-A, had been a cancerous mutation? Normally a family would have the right to refuse testing leading to this knowledge, but when your DNA is being used for large-scale research, that autonomy is stolen. Moreover, not only is the right to choose absent but in HeLa’s case, it is disclosed to researchers across the world.
Gey’s argument that he separated Henreitia from HeLa to protect the family’s privacy falls apart under even the slightest scrutiny. Clearly, he had ulterior motives. While Jess wonders if Gey did this to make the cells less human, I believe he knew informing the family would cause a legal battle. In such a suit, it would be established that the children have at least a partial ownership and thus a say in how the cells are handled. Most realistically, given how essential HeLa cells had become, the family would be entitled to financial compensation. It was thus in the interest of the entire industry to conceal the identity of the cells to “not rock the boat”. However, as Jess brings up, would even financial compensation truly remedy this situation? I feel that nothing would truly make up for the injustice Henrietta and her family continually experience. Their autonomy has been permanently stolen from them, which, for me, is irredeemable. As a result, I wonder what other possible “solutions” there are to help the family restore their rights and find closure. If anyone has a possible suggestion for this, I would love to hear about it in a follow-up comment.