March 19, 2013

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.

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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 »

Comments

  • avatar
    Chris Hughes

    I studied cell biology in the 70s and many papers referred to experiments carried out on and results derived from HeLa cells which were, I knew, human cells. There was never any discussion (that I recall) of whence they came. For all I knew (and I did not think about it) HeLa cells could have referred to a specialist cell type not an individual source of material.
    The fact that the cell line was functioning in a pathological way was something of which I was never aware and goes, I think, some way to point to the methodological flaw in the original research idea. Publication of the sequence has some validity given the importance this research has had over many decades. There clearly should have been a discussion with descendants before publication.
    However while recognising the appalling social injustice and discrimination which Mrs Lacks experienced I refuse to indulge in the condemnation which has surrounded the event in recent years. As with all media events a single incident is made to carry many subsequently imposed meanings and a significance which dwells more in the observer than the experience of the participants.
    A friend of mine died of this disorder, she and her children were glad that she was going to be cremated because the cancer that had killed her would in its turn be killed.
    There are many ways of facing mortality.

    2 years ago Reply

    • avatar
      Ayse T

      I completely with Chris Hughes comment. i too used the cell line without knowing who it belonged to and I am thankful for the contributions. I would be happy if my cells and any of existence contributed to science as Mrs. Lacks’ did. I will make a living will that my family should agree with my wishes, too.

      2 years ago Reply

  • avatar
    Thomas Lumley

    I’d also be happy with having my cells used that way. The point is that we should not just assume that other people would be happy. We know some people, when asked, don’t in fact give consent, although many people do.

    I was involved in a study of 5000 elderly people in the US, which started around 1990. We collected DNA, which wasn’t much use then, in the hope it might be useful in the future. When genomics expanded in the late 90s, we went back to ask all the surviving participants if they were still ok with us using their DNA for research (not publishing individual genomes). The vast majority agreed, enough that we don’t think there’s any problem with using the DNA from those who died before we got back to them. But some people refused, and these were people who had signed up for a long-term medical research study and come back year after year for follow-up visits, not random hospital patients.

    They should get the choice.

    2 years ago Reply

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