Thursday, August 8, 2013
For those who haven't followed the story, here's a brief recap of the controversy over the HeLa Cell line: Henrietta Lacks was a poor Southern tobacco farmer born in 1920. Ms. Lacks died on October 1, 1951 and was buried in an unmarked grave. However, cells taken from her body (without her permission) during a medical procedure at Johns Hopkins became one of the most important tools in medicial research -- the HeLa cell line. Lacks' cells were vital for developing the polio vaccine and helped uncovered secrets of cancer, viruses, and the effects of the atom bomb. Scientists eventually commercialized Lacks' unique cells. For many years they have been bought and sold the world over, and they have generated millions in profits. Nevertheless, neither Lacks nor her family ever received a dime. In fact, Lacks' family didn't even know about the existence of the HeLa cell line until last year.
NBC News has a new follow up story on the case:
On Tuesday, the National Institute of Health announced it was, at long last, making good with Lacks' family. Under a new agreement, Lack's genome data will be accessible only to those who apply for and are granted permission. And two representatives of the Lacks family will serve on the NIH group responsible for reviewing biomedical researchers’ applications for controlled access to HeLa cells. Additionally, any researcher who uses that data will be asked to include an acknowledgement to the Lacks family in their publications.
The new understanding between the NIH and the Lacks family does not include any financial compensation for the family. The Lacks family hasn’t, and won’t, see a dime of the profits that came from the findings generated by HeLa cells. But this is a moral and ethical victory for a family long excluded from any acknowledgment and involvement in genetic research their matriarch made possible.