According to a news article in Nature (subscriber only), some scientists are “alarmed” that a number of high-profile scientists and public figures are going to be the first people to have their genomes sequenced (the published public sequence is a mish-mash of a number of people, and the now-public Celera sequence, though largely Craig Venter, was also from more than one person).
For those unaware of this, 454 Life Sciences is currently in the process of sequencing James Watson’s genome, Craig Venter claims to have an analysis of his finished sequence in review at PLoS Biology, and the X Prize in Genomics will be given to the first person to efficiently sequence a number of genomes, including those of “celebrities such as television journalist Larry King, cosmologist Stephen Hawking, Google co-founder Larry Page, Microsoft co-founder Paul Allen and former junk-bond trader Michael Milken”.
Some quotes from those who don’t like this:
“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, director of Johns Hopkins University’s Genetics and Public Policy Centre in Washington DC. “It will be sort of a sad statement if that’s what we end up getting out of the Human Genome Project.”
“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.”
I’ll grant that celebrating sequencing the genomes of a bunch of celebrities is pretty tacky. Fair enough. But these critcs are entirely missing the point.
1. I haven’t thought to hard about this, but can anyone think of a major technology that was not first used by the rich? Cars, comupters, the internet, air travel, any major medical technology– all of these things were first available to those with the money to buy them. After the frontier has been broken and the technology proven, it will be improved, made more cost effective, and eventually be available to the more general public. In the article, a comparison is made between sequencing your genome and getting a private space flight, with the implication that both are ridiculous luxuries for the rich. The explcit goal of the X Prize for space flight, of course, is “to make space travel safe, affordable and accessible to everyone through the creation of a personal spaceflight industry.” The same principle is at work here.
2. Many people are wary of genetic technologies and what they bring. There are issues with privacy, with “genetic discrimination”, with what to do if you know you could pass on a genetic disease, etc. These are not issues to be taken lightly, but the critics above seem to think that the first people to have their genomes sequenced should be the people that have no idea what genetics is. According to the article, one institutional review board required that any person having their genome sequenced in a given study had to have at least a masters degree in genetics. That’s not a bad idea, because in the end, the best way to show you think that something is safe and effective is to do it to yourself first. If the first people having their genomes sequenced were individuals with no knowledge of genetics, there is no doubt the scientific community would be accused of taking advantage of ignorance get people to participate, of using less-educated people as guinea pigs, of scientific irresponsibility, and worse. Damned if you do, damned if you don’t…
N.B. if anyone wants to sequence my genome (one hell of a genome, if I do say so myself), please be in touch.