After the genome of HeLa cancer cell line was published earlier this month, researchers like Jonathan Eisen at The Tree of Life noticed that the Lacks family did not appear to give its consent to have the genome published. This, adds Peter Lipson at Forbes, is a "double ethical lapse."
As Rebecca Skloot's book The Immortal Life of Henrietta Lacks recounts, the HeLa line derived from cervical cancer cells taken from Henrietta Lacks in 1951 without her consent — and now the genome been published without consent.
"That is private family information," Jeri Lacks-Whye, Lacks' granddaughter tells Skloot in a New York Times op-ed that came out over the weekend. "It shouldn't have been published without our consent."
Skloot adds that "the Lacks family is proud of HeLa's contributions to society, and they don't want to stop HeLa research. But they do want to learn about the HeLa genome — how it can be used for the good of science while still protecting the family's privacy — so they can decide whether to consent to its publication."
At The Tree of Life, Eisen notes that researchers need to start discussing personal genome data and the consent and ethical issues such work brings up. "If we want consent to use [HeLa cells] — who will give it? I don't know the answers," he says. "But I do know one thing — science should not simply proceed forward just because these questions are hard to answer.
Skloot notes that the researchers who published the HeLa genome apologized to the family, edited their news release, and took the HeLa data down.