Life
Henrietta Lacks finally gains recognition as source of HeLa cells
The incident resulted in talks between the Lacks family and the NIH, which in turn yielded Wednesday’s deal in terms of which researchers must apply to the NIH to use the HeLa genomic data in a study, agree to terms defined by a panel that will include two Lacks family members, and contribute their findings to a database.
“Today’s release of the human genome sequencing is a historic, game-changing event,” granddaughter and family spokeswoman Jeri Lacks Whye told a telephone conference.
“In the past, the Lacks family has been left in the dark… For more than 60 years our family has been pulled into science without our consent and researchers had never stopped to talk to us… or to give us a voice in the conversation about HeLa cells, until now.”
Whye said the decision had been a complicated one, seeking to balance the needs of science with protecting her family’s privacy.
“We are proud of what HeLa cells have done for science,” she said, and welcomed a stipulation that will require researchers to recognize Henrietta Lacks and her cells’ contribution to science.
The agreement covered only researchers funded by the NIH, and would not prevent others from “piecing together” large parts of the HeLa genome from data already in the public domain, or even sequencing it from scratch.
“Such actions would not be right and would not be respectful of the Lacks family,” said NIH deputy director for science, outreach and policy, Kathy Hudson.
Collins stressed the agreement was not precedent-setting, and was necessary only because the HeLa cells were in such widespread use and the Lacks family was by now so widely known.
Copyright 2013 AFP
