In Part II: Death of The Immortal Life of Henrietta Lacks, Rebecca Skloot details what happened with both HeLa cells and Henrietta’s family after her passing. At the same time as the Lacks family was trying to move on and mourn the loss of Henrietta, the science world was booming due to the new research capabilities that Henrietta’s cells provided.
I had a major issue with the stark contrast in the way Henrietta was treated when she was a patient at Johns Hopkins compared to the way her body was treated following her passing. While Henrietta was alive, her doctors took cells from her body without even asking her, even though she should have been the person with true ownership over the cells. However, after Henrietta’s passing, the doctors were extremely careful to receive permission from Henrietta’s husband, Day, before performing an autopsy. Skloot explains that although doctors were not legally required to ask a living patient for permission to take their tissue, it was illegal to remove tissue from the dead or perform an autopsy without consent from a family member. I find this extremely troubling: it seems as though at this time, the law truly had more respect for a dead patient’s will than that of a living one. Obviously respecting the dead is crucial, but any living person should obtain full ownership of their body.
The issue of ownership also comes up when discussing the use of Henrietta’s cells by scientists without any permission from her family. Although her body was treated with this respect, her family was not even informed that doctors had taken Henrietta’s cells to use for research. Without any of the Lackses knowing it, HeLa cells became a celebrity in the science world, with doctors everywhere trying to obtain them to conduct all different types of research. When Dr. Gey became frustrated that the use of HeLa cells had become so widespread, Dr. Charles Pomerat told him that the cells were now “general scientific property,” and could be used by anyone in any way they wanted (p. 104). This use of the term “general scientific property” struck me: these cells, which were hardly recognized as belonging to Henrietta, were now recognized as belonging to anyone who wanted them. Just as the doctors took ownership over Henrietta’s cells after removing them from her body, they took full ownership over any profits that would be made as a result of Henrietta’s contribution. While scientists were granted with the opportunity to make tremendous profits from research that couldn’t have been conducted without HeLa cells, Henrietta’s family lived in poverty with no health insurance.
Even though Henrietta’s family was able to take some form of ownership over her body by giving permission for an autopsy, they had no ownership over the HeLa cells and the profits that were made off of them. The ownership that was taken from both Henrietta and her family regarding her cells is a tremendous ethical violation.