The announcement from NIH director Francis Collins and deputy director Kathy Hudson in a Nature comment piece this week comes more than 60 years since doctors at Johns Hopkins Hospital in Baltimore extracted cervical cancer cells from Henrietta Lacks without her permission or knowledge. The sample of cells, now known as the HeLa cell line, was the first cell line that could grow endlessly in culture.
Since then, the impact of the HeLa cell line has helped to contribute to research on almost every disease, including the development of the polio vaccine, and has been featured in more than 74,000 PubMed abstracts (approximately 0.3%), according to a study published in Nature this week. But the genomic architecture of HeLa “remains largely unexplored beyond its karyotype, partly because like many cancers, its extensive aneuploidy renders such analyses challenging,” according to the authors.
Privacy Concerns
The latest deal was forged between NIH and Lacks’ ancestors after scientists at the European Molecular Biology Laboratory (EMBL) in Heidelberg, Germany, published one HeLa genome sequence last March and subsequently retracted the publication when the Lacks family raised concerns about their privacy.
The Lacks family, along with author Rebecca Skloot -- who wrote the best-selling The Immortal Life of Henrietta Lacks, which is now being made into a movie by Oprah Winfrey's production company – took serious issue with the dissemination of their personal information.
This also wasn’t the first time the family has been taken advantage of by the scientific community. The Lacks family had not heard of the HeLa cells until about 20 years after Lacks’s death when scientists used her children for research without their knowledge. Their medical records were also released to the press and published without the family’s consent, according to New York Times op-ed written by Skloot in March.
NIH Agreement
The agreement between the Lacks family and NIH covers the genome sequence completed by researchers at the EMBL and another HeLa genome sequenced by NIH-funded researchers at the University of Washington in Seattle.
“Together, we have crafted a path that addresses the family's concerns, including consent and privacy, while making the HeLa genomic sequence data available to scientists to further the family's commitment to biomedical research,” Collins and Hudson wrote.
The pact will require researchers “to apply to the NIH to use the data in a specific study and to agree to terms of use defined by a panel including members of the Lacks family,” according to the comment piece.
The NIH created a working group, known as the HeLa Genome Data Access working group, to review applications for accessing the sequence data. Two members of the Lacks family will serve in the group.
Skloot said in a recent interview with The Scientist that the Lacks family is first and foremost looking to ensure that the science related to the HeLa cells continues.
“I was with the Lacks family as they did an interview the other day, and what they said basically was, ‘Money is not our big concern in this right now.’ Right now they’re thinking about science. They’re thinking about making it so that science can go forward while protecting their family’s privacy,” she said.