She has been called the mother of modern medicine. Henrietta Lacks' cells are the most widely studied in the medical world, credited with leading to important breakthroughs. They also tell a story of betrayal. When Lacks, a poor black woman, died of cervical cancer in 1951, she had no idea her unique "HeLa" cells would live on, shared with researchers worldwide without her consent or her family's knowledge. After the saga was laid out in the 2010 best-seller The Immortal Life of Henrietta Lacks—an HBO movie with Oprah Winfrey is due later this year—her family reached an agreement with Johns Hopkins University forgoing profits for a role in future research decisions. Now, Lacks' oldest son and one of her grandsons say that's not good enough. "Everyone else is making funds off Henrietta’s cells," grandson Ron Lacks tells the Baltimore Sun.
"I am sure my grandmother is up in heaven saying, 'Well, what about my family?'" he says; Ron Lacks and his father, Lawrence, plan to file a lawsuit alleging that Johns Hopkins violated Henrietta Lacks' "personal rights, privacy and body parts" through the years. Johns Hopkins contends it never patented or made a profit from the "HeLa" cells, the first to live outside the body. The cells are credited with fostering advances including the polio vaccine, cloning, IVF, and cancer research. Lawrence Lacks, 82, tells the Sun he wasn't part of the deal struck with other family members. "Instead of explaining it to me, they went three generations under me." Whatever comes of the potential lawsuit, the controversy over the cells continues to be "part of a larger debate about ethics, privacy and informed consent," notes Smithsonian. (A Tennessee mom called for a ban on Lacks' "pornographic" biography.)