False Alarm: The Celebrity Meme

There is this meme that has been going around about how “celebrity genomics” is in some way very naughty and should be avoided. This meme keeps popping up since it was first inaugurated in a news article by Erika Check entitled “Celebrity genomes alarm researchers”. Here were some of the quotes from that article:

First Francis Collins, head of the US National Human Genome Research Institute (NHGRI) in Bethesda, Maryland:

“If all the sequences obtained over the next year or two are done on scientists with strong financial positions, that will send a message quite contrary to what the genome project aimed to achieve”

Next up, Michael Ashburner, a geneticist at the University of Cambridge, UK:

“I’d hate the availability of single-genome sequencing to be based purely on money and fame. Just doing famous or very rich people is bloody tacky, actually.”

And finally, Kathy Hudson, director of Johns Hopkins University’s Genetics and Public Policy Centre in Washington DC:

“This is almost like recreational genomics, or the molecular equivalent of a whole-body scan, for those who have boundless curiosity and cash,” says Kathy Hudson “It will be sort of a sad statement if that’s what we end up getting out of the Human Genome Project.”

Kathy Hudson again in an article this week on Project Jim in The Scientist:

However, not everyone has expressed such enthusiasm for…project [Jim]. Some scientists are concerned that sequencing celebrities (J. Craig Venter also recently unveiled his genome) gives the impression that it is only for the wealthy or well-known. “It’s great that companies and academic units are making sequencing faster and cheaper,” says Kathy Hudson from the Johns Hopkins Berman Bioethics Institute. But sequencing only scientific celebrities “gives a misimpression about what genomics is all about–improving people’s health.”

I respect all of these people. I would be concerned if in five years the field of personal genomics were to look something like this:

This video doesn’t exactly capture the essence of the Personal Genome Project (PGP) or characterize what we are trying to accomplish. I would like to address the concerns of the people quoted above, but before I do that I think it would be best to wait until our project website is live (which is very soon). Between now and then, I would be interested to hear from others out there on this matter.

I realize you can’t comment directly about the PGP since you don’t have much information. I’m looking for comments on the following questions:

#1 Is there a real problem in the fact the first people sequenced are famous scientists from the field of genetics? If so, why? Who would be a better #1, #2, and #3? See question #7.

#2 If a famous person gets sequenced does this really “give a misimpression about what genomics is all about”. How?

#3 Are there any reasons why having famous people sequenced might be beneficial? How do these stack up to the negatives?

#4 There are levels of fame. Paris Hilton fame (or infamy) is one thing, what about people that are famous in small circles (which describes pretty much every scientist…sorry scientists, you’re just not that famous, even the really “popular” ones). Does this matter? I hope everyone is the bee’s knees in somebody’s eyes…

#5 I’m not interested in comments about how genomics is only or will be only for the rich and famous, CEOs and super athletes. This is hogwash. That would be a sad state of affairs, we can all agree on that. Am I’m wrong or am I misreading the future?

#6 How much does it matter that the first ten genomes are from famous people or hermits or people with a myspace page or otherwise?

#7 How likely is that, to quote from above, “all the sequences obtained over the next year or two are done on scientists with strong financial positions”? In the grand scheme of things, does it really matter who genome sequence #1, #2, and #3 is from? See question number 1 above, but be careful because you might get caught in an infinite loop.

#8 How likely is it that, to quote from above, “genome sequencing [will] be based purely on money and fame” or “for those who have boundless curiosity and cash”?

Comments are open.

Erika Check. Celebrity genomes alarm researchers. Nature 447, 358-359 (24 May 2007)

Comments

13 Responses to “False Alarm: The Celebrity Meme”

  1. Ricardo on August 2nd, 2007 4:55 pm

    Question #1
    It might not be a “problem” but I’ve always learned that sampling should be done randomly and try to make it representative of the whole. In this case I don’t find it to be problematic since it is in fact “the first 10″ and hopefully further on this won’t be a rich man’s game. And specially because they can all consciously consent to what they are doing.

    Question #2
    Nope, a person is a person is a person.

    Question #3
    It may be beneficial since it may bring more exposure to the project. On the flip-side it may make people think it’s not for your average joe to get your genome sequenced.

    Question #4
    It’s not really the fame that matters or that seems to matter. It’s just the fact that there are no non-famous (big or small circles) in the first group.

    Question #5
    Hogwash. You are right… I hope!

    Question #6
    Given my scientific background, the scientific method asks for a representative sampling and well… we are not all top-notch geneticists (yet!)

    Question #7
    This feels like a repeat question. Please refer to previous answers. Thanks.

    Question #8
    I agree with the curiosity part.

  2. jasonbobe on August 3rd, 2007 12:23 am

    Thanks Ricardo.

  3. jasonbobe on August 3rd, 2007 10:57 am

    Also see Blaine’s comments from a while back on celebrity genomes, over at her blog The Genetic Genealogist.

  4. Steven Murphy MD on August 3rd, 2007 2:26 pm

    Jason,
    The path for cutting edge thinkers has always been fraught with attacks and naysayers. Much like my friend Adam Messenger says. If you have a worthy cause and ideal, then you must continue to climb. We stand with the ideal. I feel that perhaps by only commenting on your “first ten” makes them guilty of “sampling error” They must wait until the whole project plays out. Because the fat lady has not sung.
    -Steve
    http://www.thegenesherpa.blogspot.com

  5. Keith Robison on August 3rd, 2007 10:48 pm

    The various naysayers seem to be utterly neglecting the fact that the initial cohort is taking a fantastic personal risk. Not quite ‘get shot in the sky with rockets that always blow up risk’ of the Mercury Program, but the risk that their genetic information will forever negatively impact their ability to obtain health insurance. They are setting aside a spectacular amount of privacy in order to advance a cause they are interested in.

    The other obvious missed point is that this group is doing it when sequencing is still expensive. The price is plummeting, and will continue to do so. The next 1000 will follow the first 10 so quickly it will be but a blink in historical time.

  6. jasonbobe on August 5th, 2007 1:39 pm

    John Hawks weighs in too.

  7. David Hamilton on August 9th, 2007 1:29 pm

    I don’t know if it’s a false alarm or not, and not having access to either The Scientist or Nature, it’s hard to know exactly what the writers were getting at. I did, however, think John Hawks made a good point about how many of the volunteers have major financial stakes in the success of the project. I don’t think that affects its scientific value, but it does give the project a more elitist look than George Church probably intended, particularly when you also consider the way the “bonus round” of the Archon X Prize John notes is worded.

    So, is there a perception problem about these studies? Probably not yet, since most people probably have no idea this stuff is going on. But if the next several sequencing projects are focused on the rich, powerful or financially connected, you can bet it will become more of an issue.

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