Earlier this month the European Molecular Biology Laboratory (EMBL) published the DNA sequence of the genome of HeLa cells, the cell line that is widely used for research in virology, cell biology, and many other areas. This cell line was produced from a tumor taken from Henrietta Lacks in 1951. Unfortunately the EMBL did not receive permission from Ms. Lacks’ family to publish her genome sequence, and have withdrawn the information from public databases.
The history of HeLa cells has been well chronicled in Johns Hopkins Magazine and by Rebecca Skloot in The Immortal Life of Henrietta Lacks. In early 1951, Ms. Lacks was found to have a malignant tumor of the cervix. During her examination at Johns Hopkins Hospital in Baltimore, MD, a sample of the tumor was removed and used to produce the HeLa cell line. But Ms. Lacks’ family never learned about the important cells that were derived from her until 24 years after her death.
It is quite clear that permission to publish the HeLa cell genome sequence should have been obtained from the Lacks family. This issue are discussed in an opinion piece by Rebecca Skloot in the New York Times.
I was honored to work with Rebecca Skloot during the preparation of Immortal Life, and I am flattered that Ms. Skloot thanked me in the afterward of the book. I have also written about my work with HeLa cells (that’s me in the photo with a spinner of the cells). You might also be interested in my conversation with Philip Marcus, who was the first to produce single cell clones of HeLa cells.
14 thoughts on “Henrietta Lacks (HeLa) genome sequence published then withdrawn”
Glad to see we’re taking notice of human property rights. If HeLa’s are malignant cells, how often and to what degree does the genome sequence mutate?
Good question – the HeLa genome is likely very different from the genome of Henrietta Lacks. Exactly how different is unknown, but we do know that one property of malignant cells is an increased mutation rate.
Mrs. Lacks is dead for over 60 years now. Why is her family asked for permission? They don’t have any means to speak to Mrs. Lacks, do they? Did we ask the distant relatives of King Tut for permission when we analysed parts of his DNA? I find it highly bewildering when scientists all over the world (including Professor Racaniello) use HeLa cells in their labs but start to play moralizers when the respective DNA sequence gets published. Moreover I truly hope, that Mrs. Skloot informs herself and refuses any vaccines, where HeLa cells where involved during development, because anything else would be quite hypocritical.
Put it this way, if rather than Ms. Lacks’ genome it were a book written by her, her family would still retain its copyright.
You’re conflating several distinct issues: the ethics of using HeLa cells in the lab, the ethics of benefiting from advances made using these cells, and the ethics of publishing a family’s genome sequence without their consent. This post is only about the last item, which is very different from the first two.
Genome sequence data are unusual because DNA is inherited. Publishing the HeLa sequence is highly relevant to Ms. Lacks’s descendants; they carry much of her DNA. Her sequence is, to a significant extent, their sequence. HeLa cells have mutated a tremendous amount in the lab, but it remains possible that their sequence could disclose information that the Lacks family may find troubling.
If someone sequenced my grandfather’s genome and published it, revealing that Dove DNA carries a gene predisposing carriers to serious health problems, I’d be pretty upset to have that information suddenly pop up in the public domain without being asked or at least warned. EMBL screwed up here.
I think the other thing to remember here is that her family had to struggle greatly to understand exactly what had happened to Ms. Lacks and how her cells were being used, as Ms. Skloot wrote about in her book. The group that sequenced the HeLa genome showed incredible insensitivity to the family by not engaging them.
I’d just like to point out that HeLa’s genome has been publicly available for years. Anyone with a few hours of computer time could have assembled her genome from the short read data that’s already in the public repositories. See here for more information: http://www.genomesunzipped.org/2013/03/henrietta-lackss-genome-sequence-has-been-publicly-available-for-years.php
This “scandal” (if we can really call it that) ignores the more important point: with the exception of “classic” cell lines such as HeLa, most DNA from patients that is published to public repositories is anonymized and researchers are subject to an approval process before they can obtain the data. See dbGaP’s Authorized Access policy as an example: https://dbgap.ncbi.nlm.nih.gov/aa/wga.cgi?page=login
Had she authorized the publishing of her genome while still alive, wouldn’t be its publication still potentially detrimental for her relatives? Wouldn’t this undermine their personal right to confidentiality about their genetic predispositions?
I really disagree. The scientific community as a whole screwed up by continuing to use HeLaâ€”EMBL did not do anything drastically different than anyone else had done before. HeLa’s DNA has been publicly available since at least 2008 by analyzing short read data from public databases (see my other comment). I’ll be that you could even assemble pretty good sequences for HeLa’s coding regions by downloading microarray data from the early 2000s and imputing missing data.
The fact that an error was made does not justify us to perpetuate it. Skloot’s book brought to the attention of the world of the mistakes made and it’s important not to continue them. Whether or not the HeLa genome could be assembled as you say is irrelevant. EMBL assumed the cells were in the public domain and this is incorrect.
This is really the point – how difficult would it have been for EMBL to contact the family? They assumed that the cells are in the public domain which only perpetuates the original mistake of not telling the family about the cells.
Fascinating exchange of views here. It shows how controversial the ethics of sharing DNA genome information can be. A great topic for debating with school kids…. Someone should do that… 😉
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Dr. Racanniello, where I can find the sequence of HeLa clone? I found the same cytologic structures that I recently described in a novel bacterial species. I checked all genes associated with gliding motility and possessed by antiae in normal human cell sequence – they are all absent their. Now I am trying to check with HeLa….
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