Update: After thinking some more about this, I’ve changed my mind. I’m keeping the original post below because there’s nothing wrong with changing your mind.
My position is now less “meh, what’s the big deal” and more “well, they should know better”.
In short: The space tourism comparison in the Nature article might have thrown me off in the wrong direction. That comparison is flawed because with space tourism, it’s not such a big deal if it’s available to the rich first — most technologies are like that — but a technology that has big public health implications is different, and any time lost doing things that are not optimal from a scientific merit point of view are only delaying important cures and breakthroughs and thus increasing human suffering. Those delays include sequencing celebrity genomes, but also other inefficiencies and speed bumps in the research system such as ineffective bureaucracy, grants that too rarely go out to young scientists working on high risk/benefit projects (they’re too often looking for proven track records and sure things, sometimes to the point of lacking vision), etc. Anything under human control that delays results.
Credit: Richard Wheeler, 2007. GFDL license.
Nature reports some controversy over the sequencing of the genome of some famous scientists:
Michael Egholm [described] his company’s effort [Update: his company is private and using its own funds, as far as I can tell] to sequence the genome of genetics pioneer James Watson. The company claims this is the first sequence of an individual human genome, and that it took three months and cost about $1 million. “So, is this the next space tourism?” joked a scientist inspecting the poster. […]
“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,” says Francis Collins, head of the US National Human Genome Research Institute (NHGRI) in Bethesda, Maryland. […]
“I’d hate the availability of single-genome sequencing to be based purely on money and fame,” says Michael Ashburner, a geneticist at the University of Cambridge, UK. “Just doing famous or very rich people is bloody tacky, actually.”
Why don’t I think this is that big a problem? Because things are moving so fast.
Credit: Ray Kurzweil, The Singularity is Near, p.73.
As this logarithmic graph from The Singularity is Near (follow the link to sample it at Google Books) shows, the cost of sequencing DNA is going down exponentially (a straight line on a log graph means exponential change), from $10 per base pair in 1990 to a few pennies in 2004 and even less than that now. The rate calculated in 2004 was a halving of the cost every 1.9 years, but that too is accelerating according to Kurzweil.
A good concrete example of how fast things can move and how un-intuitive exponential progress can be is the Human Genome Project itself: It started in 1990 as a 15-year project. After one year, they had done 1/10,000th of the work. If they had progressed linearly, it would have taken about 10,000 years. Around the halfway point of the project, they had about 2% of it done. Yet, they finished 2 years earlier than planned, because from 2%, if you double each year you get to 100% in less than 7 years. Another example: It took us 15 years to sequence the HIV virus, but 31 days to sequence SARS, and so on.
So I say let these scientists work on their genomes first. They worked hard to move the science forward, let that be part of their reward. It’s not as if their genetic material is somehow without scientific value, even if not the optimal starting point for various reasons. By the time they are through with themselves and before there is time for any real public outrage, the time and cost required to sequence a complete human genome will be so small that the whole point will be moot anyway.
Besides, someone who gets his/her genome sequenced a few years from now will get a lot more useful information out of it – better bang for the buck – since we’re far from knowing everything about how to interpret all that genetic information (but that’s moving along fast too). Exciting times we live in.