When Your Cells Aren't Yours
At first glance, it seems unthinkable that Lacks' family didn't know about HeLa cells, but nobody ever told them. Gey and the researchers at Johns Hopkins weren't legally bound to do so -- it was routine to take samples of blood, cells and tissues from patients without telling them or getting their consent. Nobody could've known then what would become of Lacks' cells.
It wasn't until the early 1970s that Lacks' family got an inkling of Henrietta's legacy. Her husband, Day, got a call from someone at Johns Hopkins hospital that confused him -- the person was telling him that his wife was still alive but as cells in a lab. He believed the researcher was telling him that they needed to test her children to find out if they also had cancer. The Lacks children submitted to testing but were never contacted about the results. Author Rebecca Skloot, who published "The Immortal Life of Henrietta Lacks" in 2010, states that the family was misled about the research, which was not done to help them but to better understand Henrietta's genetics. Skloot befriended members of Lacks' family, including her daughter, Deborah Lacks-Pullam. Lacks-Pullam even visited a lab at Johns Hopkins, holding a vial of HeLa cells and whispering, "You're famous" [source: New York Times].
Gey and Johns Hopkins didn't profit off HeLa, but the cells and related products have been sold since 1954. The Lacks family has not received any money, and they cannot afford health insurance. Her children received very little education, and many of them have health problems. They're angry, and critics have argued that at the very least, they've been marginalized and disrespected.
Today patients sign consent forms stating that tissues can be used in research, but the argument used by the medical community is that once blood or tissues are removed from you, they're not really yours anymore. It would be far too complicated, and would ruin the field of medical research, to have to track the identities of each sample and pay if there's monetary gain. The courts have sided with researchers so far. In the 1980 case of Moore vs. Regents of the University of California, a leukemia patient discovered that his doctor had filed a patent and created a cell line worth $3 billion using his cells. The Supreme Court ruled that Moore had no right to share in the profits.
Henrietta Lacks has finally gotten some recognition. Her contributions have been commemorated by organizations like the Morehouse College of Medicine and the Smithsonian. There's Skloot's book, which HBO has optioned for a movie. And after 60 years, a headstone was finally placed at her grave. Skloot has also created the Henrietta Lacks Foundation to educate people about Lacks and to help her family and others.