While 31-year-old Henrietta Lacks laid in a hospital bed, dying of cervical cancer, doctors took two samples of the tumor cells growing inside her. 62 years later, those cells are still growing and have served as the foundation for countless experiments, including vaccine development and drug safety trials. Problem is, Henrietta Lacks had no idea this had happened, and neither did her family until 1973, when a scientist called to ask for blood samples from her children as part of a genetic experiment. For the last 40 years not much has changed, researchers have continued to cultivate millions, if not billions or trillions, Mrs. Lacks' cells, while her family has sought information, a portion of the proceeds and, most importantly, control over her genetic legacy. Now, the National Institutes of Health (NIH), has returned control of the cell line to her descendants, including granddaughter Jeri Lack Whye.
The primary impetus was the family's privacy. One scientist managed to generate a rather full report of personal information about Lacks and her family after just a few minutes with some of her endlessly reproducing cells. This prompted the NIH to work out an agreement with her family that gives them partial control over the cell line. When companies request access to the genome, which is stored on NIH servers, the family will be consulted and asked for their consent before the data is delivered. There will be no financial compensation for the decades of profit made by medical institutions off their genetic heritage, but at least they'll have some say in just who can go poking around in the family genes.
Photo courtesy of The Henrietta Lacks Foundation