Monday, February 17, 2014

Why we didn't sequence HeLa

Recently, another paper about HeLa's genome sequence was published in Nature. Along with that came an article explaining how the ethical ramifications of publishing the sequence of HeLa were handled before this recent paper's release.

My friend Dr. Cuiping Pan asked about why, when we were deciding on a cell line to whole genome sequence and publish back in 2008, we chose U87MG rather than HeLa. Here is my response:

At the time, we had a big argument about whether to do HeLa. We all knew it would be higher profile to do HeLa, but even in 2007/8 we were aware that the cell line had been derived without Henrietta Lacks' informed consent. Meanwhile, obviously HeLa is the most commonly used cell line, so we knew it would be more useful generally than U87MG, which we identified as the most commonly used glioma cell line but also only around the twelfth most commonly used cell line generally. [A quick Pubmed search finds 1,110 papers with the term "U87MG" in them, compared with 78,343 for HeLa!]

So it came down to an ethical choice versus a utilitarian choice, and it happened that the ethical choice would also be less "rewarded" with references, high impact journals, et cetera. In fact, we spoke with Nature and were basically told it would be harder to publish U87MG than HeLa there (but it's a moot point because we also wanted to support open access and Plos, which is why we went for Plos Genetics at the time).

Anyway, looking back I think we made the right choice. Back then, Francis Collins was not head of NIH and the book on Henrietta Lacks had not been released yet. The [European] group who subsequently sequenced HeLa got in a lot of hot water.

As for U87MG, we looked into its history. It was an anonymously donated sample that had been consented as far as we could tell in Germany. [Note: This is all off the top of my head, so don't use that as a primary reference, please.] The particular individual it was derived from was not publicly known that we could see, though his identity is still likely in the medical records of the hospital where he was treated. We did not try to find out who he was, because keeping him anonymous and deidentified was the ethical choice.

Also, on a practical level, doing a male genome seemed interesting since it would get us Y chromosome, but that was a minor and not very compelling reason.
I am of the opinion that as geneticists and genomic scientists, we must do things above the board and be very careful about informed consent and protecting people's identities. There is literally nothing as identifying as the genome, so we must be cautious and considerate in all cases. This is why, before ever considering sequencing something, we always need to consider the ethical implications.

HeLa, the cell line, is something we simply cannot give up on now. It is too late, and it has done too much good and it has too much future potential to do good in the future for all of us. But even with that in mind, I still feel using it and even sequencing it is questionable. It's a hard feeling to shake and it's sourced at the fact that the person who the cell is derived from never consented. I think, over the past few years, the dialogue between health science and the Lacks family has been a very good change, and I'm very happy the Lacks have basically consented to use of HeLa generally.

Really, it goes to show why it is so important for us to do as much as possible to behave ethically from the start. To avoid these types of situations in the future.

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