How could this possibly go wrong?
There’s a new research paper out that sequences the genome of one of the most important cancer cell lines, HeLa. It shows the fascinating genomic mess that can arise when a cell is freed from the normal constraints against genetic damage, and it gives valuable information about a vital research resource.
However, the discussion on Twitter (or at least the parts I frequent) has been dominated by another fact about the paper. The researchers apparently didn’t consult at all with the family of Henrietta Lacks, the person whose tumour this originally was. There are two reasons this is bad.
Firstly, publishing a genome of an ancestor of yours allows people to learn a lot about your genome. The high levels of mutation in the cancer cell line reduces this information a bit, but there’s still a lot there. As a trivial example, even without worrying about genetic disease risks, you could use the data to tell if someone who thought they were a descendant of Ms Lacks actually was or wasn’t. Publishing a genome without consent from, or consultation with, anyone is at best rude.
And secondly: come on, guys, didn’t you read the book? From the author’s summary
In 1950, Henrietta Lacks, a young mother of five children, entered the colored ward of The Johns Hopkins Hospital to begin treatment for an extremely aggressive strain of cervical cancer. As she lay on the operating table, a sample of her cancerous cervical tissue was taken without her knowledge or consent and given to Dr. George Gey, the head of tissue research. Gey was conducting experiments in an attempt to create an immortal line of human cells that could be used in medical research. Those cells, he hoped, would allow scientists to unlock the mysteries of cancer, and eventually lead to a cure for the disease. Until this point, all of Gey’s attempts to grow a human cell line had ended in failure, but Henrietta’s cells were different: they never died.
Less than a year after her initial diagnosis, Henrietta succumbed to the ravages of cancer and was buried in an unmarked grave on her family’s land. She was just thirty-one years old. Her family had no idea that part of her was still alive, growing vigorously in laboratories—first at Johns Hopkins, and eventually all over the world.
That’s how they did things back then. It’s not how we do things now. If there was a symbolically worse genome to sequence without some sort of consultation, I’d have a hard time thinking of it.
I don’t think anyone’s saying laws or regulations were violated, and I’m not saying that the family should have had veto power, but they should at least have been talked to.
Thomas Lumley (@tslumley) is Professor of Biostatistics at the University of Auckland. His research interests include semiparametric models, survey sampling, statistical computing, foundations of statistics, and whatever methodological problems his medical collaborators come up with. He also blogs at Biased and Inefficient See all posts by Thomas Lumley »