Feds, Family Reach Deal On Use Of DNA Information From Baltimore Woman
BALTIMORE (WJZ) -- About 60 years ago, a doctor at Johns Hopkins Hospital removed cancer cells from a poor, black patient named Henrietta Lacks without telling her. Those cells eventually led to many life-saving medical treatments.
Now Lacks' family is finally given a say in some of the research.
Jessica Kartalija has more on the settlement of the saga made famous by a best-selling novel.
A new agreement not only protects the family's interest, but also encourages scientific research moving forward.
Family members of the late Henrietta Lacks have teamed up with the National Institutes of Health to keep helping the scientific community.
"We wanted to continue the legacy of Henrietta Lacks," said David Lacks, grandson.
Sixty years ago, doctors in Baltimore removed some of Henrietta Lacks' cancer cells and began duplicating them without her knowledge or consent. In the research world, they became known as "HeLa" cells, from the first two letters of her first and last name.
"I think it's impossible to overstate how important they've been for science. There isn't a single person out there who hasn't personally benefited from these cells in some way," said Rebecca Skloot, author of the Lacks biography.
Rebecca Skloot help shed light on the family's privacy concerns with a best-selling book. They became alarmed when German researchers recently published the DNA code online.
"People are now acknowledging my grandmother as not just a cell but as a person," said Veronica Spencer, granddaughter.
Researchers must now apply to use the HeLa cell data, and a board with Lacks' family members has to OK it.
"Family members, as in this situation, also have a stake in what happens with these materials and ought to be at the table when we're making decisions on who gets access," said Francis Collins, NIH Director.
Once again, Henrietta Lacks is breaking new ground for science. This time it's with her family's consent.
Researchers who do get the green light to use those HeLa cells first must acknowledge Lacks' contribution to science.
The Lacks family is not getting any money in this new arrangement.
