“Everyone else is making funds off of Henrietta’s cells,” Lacks’s grandson, Ron Lacks, told the Sun. “I am sure my grandmother is up in heaven saying, ‘Well, what about my family?’”
Johns Hopkins told the newspaper that the institution had never patented nor profited from the cells.
The Lacks story was documented in a book, The Immortal Life of Henrietta Lacks, which highlighted how the paucity of informed consent affected her family. In 2013, family members worked out a deal with the National Institutes of Health for the appropriate sharing of the HeLa genome with researchers. At the time, journalist Rebecca Skloot, who wrote The Immortal Life, told The Scientist that commercialization was discussed during negotiations between the Lackses and the NIH, but that science was the focus. “I was with the Lacks family as they did an interview the other day, and what they said basically was, ‘Money is not our big concern in this right now.’”
Lacks’s son Lawrence Lacks, who joins his son and daughter-in-law in asking for financial compensation, told the Sun he was not part of the agreement with the NIH. According to the newspaper, “the family said they want to her cells to be owned by her estate and they would set up a foundation to allow everyone to benefit from the cells.”