Johns Hopkins has attempted to make amends to the family of Henrietta Lacks (the woman who died of cancer at Johns Hopkins Hospital in 1951, and whose remarkably “immortal” cells have been used for research since then) — they’ve endowed a lectureship, created a scholarship fund at an East Baltimore school, and donated money to local non-profits in her name. And now, finally, they’re giving her family a say in how her genetic material is used.
The story of Lacks and her family was detailed in Rebecca Skloot’s surprise bestseller The Immortal Life of Henrietta Lacks. There’s too much to go into here — read the book! — but suffice to say, the university wasn’t always very considerate of Lacks or her family, despite her cells’ role in countless medical breakthroughs. (Okay, here’s a short version: after Lacks’ death, a lab tech discovered that her cells kept reproducing; they haven’t stopped in the 60+ years since. This is remarkable, because medical researchers were able to rely on the so-called HeLa cells for experiments that helped develop treatments for influenza, leukemia, Parkinson’s, etc. But while trillions of their mothers’ cells were being used in labs worldwide, Lacks’ Baltimore family had no clue what was going on.)
This week, the NIH announced that it’ll give Lacks’ family members some control over access to the DNA code of the cells, and that they’ll receive acknowledgement in any scientific papers that result. They won’t make any money from the arrangement. “In the past, the Lacks family has been left in the dark… [now] we are excited to be part of the important HeLa science to come,” said Jeri Lacks Whye, one of Lacks’ Baltimore-based granddaughters.
The Immortal Life of Henrietta Lacks was fascinating. A must read.