The NIH has recently announced an agreement with the Lacks family regarding the future use of the HeLa cell line. We know many biology, history and ethics classes use Rebecca Skloot’s wonderful book, The Immortal Life of Henrietta Lacks, to introduce key concepts about everything from cell biology to informed consent to race relations in America. This recent news – that the family now has a meaningful seat at the table to decide if and how HeLa are used going forward – is another remarkable chapter in the story of Henrietta Lacks.
Francis Collins, Director of the NIH, explains his thinking about the new policy to Ewen Callaway in this Nature article, and presents an overview of the issues leading up to this new approach. When a German research team published a HeLa genome sequence without a consent process – and Collins learned an American team was about to do the same – he realized that while we may have come far in our understanding of how to treat research subjects this issue is still an ongoing challenge. As a result of the agreement, the Lack’s family now has 2 seats on a 6-person committee that grants access to HeLa cell research and the family will be acknowledged in research publications using HeLa cells.
“NIH, family of Henrietta Lacks reach deal on access to DNA code” by Malcolm Ritter in the Washington Post presents a nice overview of the agreement and also some background to this evolving story.