Henrietta Lacks' Family Finally Gets Say in Genome Research
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After 62 years, the NIH is giving Lacks' family recognition for the genome and cell research gained by studying Henrietta's immortal cells.


(Image source: The Lacks Family )   BY MATT PICHT     A privacy debate 62 years in the making finally came to a close Wednesday, as the descendants of Henrietta Lacks reached a decision about what to do with Lacks’ genes.   Henrietta Lacks was a poor black woman who died of cervical cancer on October 4th, 1951, at the age of 31. Tumor cells from Lacks were taken by Dr. George Grey of Johns Hopkins for study. (Via The Lacks Family )   Grey soon found the cells kept growing and replicating outside the body, making them perfect for research. He replicated and distributed these “HeLa” cells to other scientists. (Via Vimeo / RadioLabs )   Since then, HeLa cells have been used in upwards of 74,000 studies. Rebecca Skloot, author of the bestselling book “The Immortal Life of Henrietta Lacks”, explained to CBS how valuable these cells have been to science.   “They were used to help test the polio vaccine so that it could be approved for use in people. … Hers were the first cells ever cloned, some of the first genes ever mapped. … The range of things HeLa cells have been used for is kind of incomprehensible.”   But neither Lacks nor her family ever gave consent or received compensation for the use of her cells. Until the 1970’s, Lacks’ family didn’t even know the HeLa cell line existed.   Earlier this year a German research company caused a privacy controversy when it published the HeLa cells’ genome — without the family’s permission. The information could be used to look into the family’s medical and genealogical history. (Via NPR )   In response, the National Institutes of Health held a series of meetings with the Lacks family, and on Wednesday the NIH announced it had reached a compromise.   The family has agreed to grant researchers access the HeLa genome provided they apply for access and include an acknowledgement of the family. Dr. Francis Collins of the NIH says the new policy will “ afford future generations of research participants the protections and respect that were not in place during Lacks' lifetime.” (Via Nature )   An ethicist for NBC says “in reaching this sound moral solution, 62 years of mistreating and ignoring a woman and her family who unknowingly helped so many live better lives have finally come to an end.”   But Dr. Collins was quick to point out the Lacks family is a special case — a broader policy for dealing with genetic privacy concerns is more elusive. And as CNN points out, protecting that privacy is growing more and more difficult.   “A routine hospital visit to draw blood or excise a growth could result in excess cells or tissue being stored and later used for research...”   Dr. Eric Lander, founder of the Broad Institute, told The New York Times , concerns over privacy need to be resolved before genetic research can advance constructively.   “If we are going to solve cancer, it’s going to take a movement of tens of thousands, or hundreds of thousands, of patients willing to contribute information from their cancer genomes towards a common good. … We can’t do it without a foundation of respect and trust.”   Two representatives for the Lacks family will be part of the board that reviews applications for the HeLa genome. The official agreement between the NIH and the Lacks family goes into effect this week.