We've written quite a bit here about Henrietta Lacks, the poor black woman who died in 1951 of cervical cancer, and whose cancer cells - taken without her knowledge - led to great advances in biomedical research. (Lacks' story was told in the award-winning The Immortal Life of Henrietta Lacks.) Lacks' family, in the words of Smithsonian blogger Rachel Nuwer, have "harbored a deep discontent about their relative’s stolen cells;" "they were never informed that Lacks’ cells were taken; they never received any royalties from the HeLa line; and researchers often ignored Lacks’ great personal legacy."
Today, there's big news about Lacks, with Nature reporting that the family reached a deal with the National Institutes of Health regarding access to the so-called HeLa cells. Ewen Callaway explains how the agreement came to be and also addresses the issue of financial compensation:
Some Lacks family members raised the possibility of [it],[NIH director Francis] Collins says. Directly paying the family was not on the table, but he and his advisers tried to think of other ways the family could benefit, such as patenting a genetic test for cancer based on HeLa-cell mutations. They could not think of any. But they could at least reassure the family that others would not make a quick buck from their grandmother’s genome, because the US Supreme Court had this year ruled that unmodified genes could not be patented. [Henrietta’s granddaughter Jeri] Lacks-Whye says that the family does not want to dwell on money — and that her father has often said he “feels compensated by knowing what his mother has been doing for the world."