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People got rich off my mother without us even knowin about them takin her cells, now we don’t get a dime.
This quotation comes from the “Deborah’s Voice” section before Chapter 1. Here, Deborah neatly sums up the great injustice at the center of Henrietta’s story. The scientists at Hopkins who biopsied Henrietta’s cells and cultured them never considered the person whose cells they took. They did not ask permission, nor did they ever make any attempt to explain what they did to the family. Meanwhile, her family is forced to piece together the meaning of HeLa cells on their own with no financial resources.
Berg didn’t explain how releasing Henrietta’s name to the public would have protected the privacy or rights of her family. In fact, doing so would have forever connected Henrietta and her family with the cells and any medical information eventually derived from their DNA.
This quotation appears in Chapter 14, as Roland Berg, a journalist who in the early 50s hoped to include Henrietta Lacks in an article about HeLa cells. After Gey and TeLinde refuse to release Henrietta’s name, he insists including it would benefit her family and was necessary to make the story exciting. To Berg, Henrietta Lacks is a human-interest hook to make his story interesting, and he values the story over the Lacks family’s privacy. Both the journalistic desire to make Henrietta a narrative hook and the scientific desire to separate her from her cells decenters the Lacks family’s desires.
Scientists don’t like to think of HeLa cells as being little bits of Henrietta because it’s much easier to do science when you disassociate your materials from the people they come from.
Robert Stevenson, a researcher who has worked extensively with HeLa cells, makes this comment in Chapter 27, when Skloot describes the boom of research done with the culture. Some scientists begin to claim that HeLa cells are no longer human because they have replicated so many times since being part of a human body. Stevenson dismisses this hypothesis as a psychological crutch that makes doing work on human tissue cultures easier. According to Stevenson, it’s often helpful for scientists to try and erase the human side of their work.
No one in Henrietta’s family had ever seen those medical records, let alone given anyone at Hopkins permission to release them to a journalist for publication in a book the whole world could read.
In one of the worst violations the Lacks family faces, journalist Michael Gold publishes Henrietta’s medical records in his book on HeLa contamination. Shockingly, no one at Hopkins will admit responsibility for giving Gold the records or permission to publish them. Worst of all, the Lacks family had not even had access to those records, meaning they learned the information in them from the book as opposed to Hopkins. No one in the process of the creation of this book considered the emotional impact or the violation of privacy in publishing those records in the pursuit of writing something that was complete in terms of information.
There is no evidence that the scientists who did research on patients at Crownsville got consent from either the patients or their parents.
This quotation appears in Chapter 35, when Skloot and Deborah learn the horrific truth of Elsie’s time in Crownsville. As they read the records, Deborah’s observations of Elsie being beautiful, looking like she was in pain, or that Elsie needed her sister highlight Elsie’s humanity and that she was deeply loved. The reality that Elsie was a valuable and beloved person contrasts sharply with the callous and unfeeling treatment she was subjected to. Because she was a disabled Black woman, the Crownsville scientists felt they could ignore her humanity and use her as a research subject.
