Genetic Future

Further response to Camilla Long’s ode to genetic ignorance

Posted by Daniel MacArthur on March 23, 2010
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Earlier this month I wrote a post skewering a terrible opinion piece about personal genomics in the Sunday Times by Camilla Long. This was my conclusion:

If Long wishes to stay ignorant of her own genetic risks – just as she has managed to remain ignorant of the entire field of genetics, even while writing an op-ed piece about it – that should be her choice. But her criticism of others who choose to pursue a greater understanding of their own genetic risk is entirely, horrendously misplaced.

Dan Vorhaus from Genomics Law Report was equally disgusted by the piece. While we were unsuccessful in getting a formal response published as a letter in last weekend’s Sunday Times [added 01/04/10: a heavily-edited version of our letter has now been published], we’ve now penned a combined rebuttal to Long’s article as a post on the Times Online Science blog.
Thanks to the Times Online Science crew for kindly agreeing to host the article!
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Comments

  1. #1 Moopheus
    March 23, 2010

    My dad died from complications of his MS and diabetes–and he wasn’t the only one in his family to have those problems. It was one (of a number) of reasons I haven’t had children–wondering if my own genes weren’t worth passing on. Would I have thought differently if such a test were available 20 years ago? I can’t say–but I think I would have might have taken the opportunity to find out. So I think I have to agree with you–just because she doesn’t want to know, doesn’t mean it wouldn’t be helpful for others. It would have been better, I think, to have information to go on, rather than just a guess. I think it is legitimate to be concerned that the information could be used against you by employers, insurers, and the like, but that can be addressed in other ways than just denying the service outright.

  2. #2 Paul Jones
    March 24, 2010

    For my patients who don’t know their biological relatives, what will supplement family history? Genetic testing. Or shall these people remain second class medical citizens?

  3. #3 Kevin
    March 27, 2010

    I just came across this article featured on Wired about “decision trees”. In this case, about the series of decisions a woman went through to get preemptive surgery to protect against breast and ovarian cancer.

    http://www.wired.com/magazine/2010/01/ff_decisiontree/2/

    “Teri Smieja had a choice to make. A mother of two living in the small town of Ridgecrest, California, she learned in February 2009 that she has a much higher risk of developing breast and ovarian cancers than the typical American woman. And she needed to figure out what to do about it.”

  4. #4 Michael T.
    March 29, 2010

    I agree more with Long’s piece than with yours. Long says explicitly that she is not advocating genetic ignorance, so your swipe strikes me as willful characterization. Long rightly points out that the hype-to-reality ratio is awfully high in this field. Markers that have so far been identified by GWAS studies are nearly useless in practical terms for medical decision making. We are at the beginning of a very long road of discovery. If you want to be a shill for industry, fine, but she’s right about the science.

  5. #5 Daniel MacArthur
    March 29, 2010

    Hi Michael,

    Long explicitly states that DTC genetic tests should be outlawed (in fact she wrongly states that they are already outlawed in the UK, and “rightly so”). She asks “who — in their right mind — would want to know” their own genetic data, and claims that receiving genetic disease risk predictions will result in “incalculable [...] cost to our collective mental health”.

    Long may well claim that she is not advocating genetic ignorance, but look at her actual words: how can labelling those who are interested in their own genetic data as mentally ill, and then gratuitous (and empirically unjustified) fear-mongering about the emotional risks of receiving genetic risk data be interpreted in any other way?

  6. #6 Neil
    March 29, 2010

    I saw Long’s article as originating in [a] a chance encounter with a celebrity genetics story; and [b] her disappointment that genetics was not delivering what she had thought it would, genetic determinism. She then blethered to the requisite word count.

    However, if the likes of 23andme are overstating the scientific case for genetic testing in order to promote their business, they should be called on it.

    And talking of business opportunities, anyone know who paid for Glenn Close’s sequencing, given she has a worthy cause, and Illumina a business, to promote?

    http://www.reuters.com/article/idUSTRE62A5P620100311

    Whereas the first human genome cost $3 billion and took more than a decade to produce, Illumina charges $48,000 for the kind of sequencing Close got. The company would not say whether it charged her.

    …

    “Jay Flatley, who is the head of Illumina, called me up,” Close said. “He said there are very few named women who have gotten this done. I may be the first. I’m proud of that.

  7. #7 Daniel MacArthur
    April 1, 2010

    Hi Neil,

    Fair points. However, it’s worth noting that the vast majority of claims made by 23andMe are well within the realms of science, and they actually do a far better and more nuanced job of conveying the uncertainty of genetic risk predictions than most clinicians would.

    Not sure who paid for Close’s genome – might see if I can find out from Illumina…