The Legacy of Henrietta Lacks: Controversy over HeLa Cells
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The Immortal Life of Henrietta Lacks centers around a unique line of cancer cells taken from an African American woman named Henrietta Lacks. She was diagnosed and subsequently died of cervical cancer in 1951. It was astonishing to uncover the raw size of the cell line and the myriad research used to which her cells were put unparalleled in modern biological science. The cells replicated constantly and voraciously and have to date produced approximately 50 million metric tons of cellular material for research. Neither she nor any of her descendants received any compensation for her cell line, a line that has made billions of dollars for the medical community.
The last statement stimulated a good discussion on the ethics of compensating people for their own biological material. On the one hand, the medical establishment made billions of dollars from her cells, but her family lived in or close to poverty and most could not afford basic health insurance. On the other hand, the courts have affirmed that such material is essentially “medical waste” over which the donor has no ownership rights. In part, this is to ensure that people in desperate straits are not tempted to sell body parts or blood just to get by and it reduces the chances of active markets in body parts say from prisoners or by corrupt officials. Medical folks also argue that marketing biological tissue, including Henrietta’s cells known as HeLa cells, would dramatically increase the cost of medical research to the detriment of all. I came down on the side of perhaps some compensation for Henrietta’s family, but at minimum at least some public recognition for her singular contribution to medical science.
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In general, I thought that the laws governing compensation for donors was probably stacked in favor of the medical establishment, including drug companies that profit mightily from such “medical waste”. I did not necessarily feel that race or class had figured into the equation, though in general it is easier for institutions to “push around” poorer, less educated folks. Would Henrietta have approved of how her cells were used? I felt that she probably would have, but also saddened that her descendants had not benefitted at all.
Additionally, the author interjected herself extensively into the HeLa story. Generally, I felt that was appropriate because a major piece of the story was her detective work and extraordinary persistence in uncovering both the families and the medical communities’ stories. This book demonstrated the power imbalance that most people seeking health care may have experience or have experienced.