Geneticists take HeLa sequence off-line after Lacks family notes they hadn’t given consent
HeLa — the cell line that has apparently taken over any number of others commonly used in science, suggesting that many researchers may not have been studying what they thought they were studying — is back in the news. This weekend, it was the DNA sequence of the cells that’s made headlines, with a quiet unpublishing of data.
As Rebecca Skloot, author of The Immortal Life of Henrietta Lacks — Lacks’s name is where “HeLa” comes from, as they’re her cells — wrote in the New York Times Sunday, a group of researchers at the European Molecular Biology Laboratory published an analysis of the HeLa cells’ genome on March 11 in G3: Genes, Genomes, Genetics, a new journal from the Genetics Society of America.
That genome, of course, could be very useful in research, given how widely used HeLa cells are. But the problem was that it also reveals a great deal about the genetics of Lacks’s family, despite an author’s claim in a press release that “We cannot infer anything about Henrietta Lacks’s genome, or of her descendants, from the data generated in this study.” And the family hadn’t given consent for the genome to be published.
Unfortunately, as Skloot notes, this was yet another violation of the family’s privacy:
The family has been through a lot with HeLa: they didn’t learn of the cells until 20 years after Lacks’s death, when scientists began using her children in research without their knowledge. Later their medical records were released to the press and published without consent.
Although with a few exceptions the scientific community was “surprisingly silent on the issue,” Skloot writes (we’ve added a few links):
After hearing from the Lacks family, the European team apologized, revised the news release and quietly took the data off-line. (At least 15 people had already downloaded it.) They also pointed to other databases that had published portions of Henrietta Lacks’s genetic data (also without consent). They hope to talk with the Lacks family to determine how to handle the HeLa genome while working toward creating international standards for handling these issues.
Those international standards are the major issue that this situation highlights. If this spotlight leads to real reforms, transparency, and trust, that would be a good thing.
In the meantime, it seems to us, the G3 paper is in a bit of limbo: For good reason, the data it’s based on aren’t publicly available — a requirement of publication. We’ve contacted the editor of the journal to find out if there are any changes planned, and will update with anything we learn.