Project Jim, celebrity sequencing, and the divine right of geneticists

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Sandra Porter

I want my genome sequenced, too!

Apparently, it's become a popular thing to get your genome sequenced. Craig Venter was the first. Jim Watson's genome (of Project Jim) was ceremonially released this morning (courtesy of 454), and now George Chuch, Larry King, cosmologist Stephen Hawking, Google co-founder Larry Page, Microsoft co-founder Paul Allen and former junk-bond trader Michael Milken want theirs done, too (1).

Two articles from different GenomeWeb releases made a strange combination this morning when I turned on my computer. In one release, GW mentioned that NHGRI (the National Human Genome Research Institute) will be sequencing the genomes from 1000 individuals (1, 2). In another release, they cited an article from Nature describing the reaction of ethicists and geneticists to the recent announcements about celebrity sequencing projects.

Once again, it seems like no one talks to each other.

tags:

From Nature:

Tension over the issue surfaced this month at the annual genomics meeting at Cold Spring Harbor Laboratory in New York. There, some researchers expressed concerns that sequencing prominent scientists first will make personal genomics look like a tool for the rich and privileged.

Nature quotes policy directors and scientists who call the idea "tacky" and rail against "recreational genomics."

(I do genomics for fun, why not have "recreational" genomics?)

One of the most interesting statements in the Nature article, though, was this:

The institutional review board that approved Church's project, for instance,

[George Church is at Harvard]

said that only people with a master's degree in genetics, or the equivalent, should be allowed to volunteer, to ensure that they understand the implications.

Only people with a master's degree in genetics are capable of understanding the implications of having your genome sequenced?

Whooah!

And ahem, they are concerned that personal genomics might "look like a tool for the rich and privileged?"

Luckily, the authors of the second press release (from the NIH) seemed unaware of the other and oblivious to the curious juxtaposition of the two announcements.

The NHGRI press release describes the ClinSeq study, which has the laudable goal learning more about heart disease. Researchers will work towards this goal, by guess what, sequencing the genomes of 1000 individuals between the ages of 45 and 65, in the Washington D.C. -Maryland area.

I can't help wonder, if you have to have a masters degree in genetics to give informed consent (as it seems you do at Harvard), it could be a challenge to recruit people for the study, even when the study area includes the NIH.

Are there 1000 individuals, between 45 and 65, in that part of the country with masters degrees in genetics?

Maybe the IRB at the NIH has less rigorous criteria for eligibility. Who knows? Maybe they would even consider people with Ph.D.'s in other subjects, or even M.D.s (!), capable of giving informed consent.

It is truly a brave, new, world.

CORRECTION: As Keith Robison pointed out, in the comments section, NHGRI is really only sequencing 200-400 genes from the 1000 individuals. This is far less than a complete genome.

References:
1. Matt Jones, May 31, 2007. "NHGRI to Sequence Genomes of 1,000 Individuals as It 'Explores Medical Role' of DNA Sequencing" GenomeWeb Daily News"

2.ClinSeq: A Large-Scale Medical Sequencing Clinical Research Pilot Study. May 29, 2007.

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