Henrietta Lacks's cells were harvested without her permission or knowledge, and her family was never notified nor compensated.
At the time that Henrietta Lacks’s tissues were taken, science was nothing like it is today. It did not occur to the doctors that they were opening up a can of worms. Deborah says it best.
I always say my mother was HeLa. They get all excited, tell me stuff like how her cells helped make my blood pressure medicines and antidepression pills and how all this important stuff in science happen cause of her. (Ch. 1)
She does not want to know any of this. She only wants to know who her mother was. She does not know this. She also did not really benefit from the breakthroughs that came from HeLa. Science did. Doctors did. Henrietta did. Her family didn’t.
Henrietta Lacks was a poor black woman who had cancer. Richard Wesley TeLinde and George Gey harvested her cancer cells and changed cancer research forever.
Was the family wronged? Unquestionably. They never benefitted, at the outset, from their mother’s “donation” when so many other people did. Yet the issue is so much bigger. Spiritually, something was taken from their mother, and taken from them. A piece of her was taken, and used, as if it meant nothing. That is a difficult thing to live with. This is largely because of her race.
The questions of (1) whether or not permission was received from the “donor” or her family for either the “use” of HeLa worldwide or the “mass,” and commercial, production, distribution, and marketing of Mrs. Lacks’ cells … (Ch. 28)
Years later, it was acknowledged that her children or children’s children should get something, and scholarship funds were established. The fact that so much damage had been done for so long had only recently come to light with the help of Skloot and her book. Many doctors believed, as Nazis and Victor Frankenstein, that all was fine because they acted in the name of science.