NIH finally makes good with Henrietta Lacks’ family — and it’s about time, ethicist says

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FOREWORD BY THE EDITOR OF “LOST BELOW THE FOLD”, LAUREN CROOM

For years the Lacks family struggled to preserve the privacy of the very thing that was uniquely proprietary to them, their DNA. This family’s contribution to science can never fully be calculated. They have never seen a dime of the billions of dollars made using their cells, and yet they are still making strides in medicine by paving the way for a more ethical outlook going forward. Thank you Lacks family, for your continued endowments to science and the world at large.

BY ART CAPLAN, PH.D.

Over the past six decades, huge medical advances have sprung from the cells of Henrietta Lacks, a poor, African-American mother of five who died in 1951 of cervical cancer. But Lacks never agreed that the cells from a biopsy before her death taken could be used for research. For years, her own family had no idea that her cells were still alive in petri dishes in scientists’ labs. They eventually learned they had fueled a line called HeLa cells, which have generated billions of dollars, but they didn’t realize until this spring that her genome had been sequenced and made public for anyone to see. 

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