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

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.

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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?


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.

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.


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What is this about "Project Jim"? It appears in the title, but is never again mentioned.

By Tegumai Bopsul… (not verified) on 31 May 2007 #permalink

The GenomeWeb headline was a bit misleading; the ClinSeq proposal appears to target 200-400 genes for resequencing, not anywhere near entire genomes (this is what is in the body of the article).

I think the Harvard study is bending over backwards on caution since this is new ground. A big piece is the fact that the Harvard group feels that anonymity is unlikely to be successfully preserved. Clearly this won't be a long-term requirement.

The GenomeWeb headline was a bit misleading; the ClinSeq proposal appears to target 200-400 genes for resequencing, not anywhere near entire genomes (this is what is in the body of the article).

Ooops, I see what you mean. I looked at the NHGRI web site again . 200-400 genes is a bit shy of a complete genome.

I'm sure you're right too, about Harvard. The statement in the Nature article just impressed me as a bit snobby.

What thing to contemplate with the elitism charge: we are surrounded by technologies that were initially the playthings only of the rich and powerful: cars, airplane travel, PCs, cell phones, huge TV sets, etc. Those early pioneers pay through the nose & by doing so help drive the technology to be affordable to larger numbers of people. A little elitism isn't necessarily a bad thing -- so long as it is a passing phase and not a permanent situation.

Oh, I didn't miss the distinction about the medical benefits. I am a big fan of resequencing! It's the gold standard for discovering SNPs and doing genotyping! And I think the ClinSeq project will be an important one.

I just didn't realize or read carefully enough to catch that the title of the GW article wasn't quite right and that ClinSeq wasn't proposing to sequence entire genomes.

I still think that the criteria for eligibility established by the Harvard IRB are elitist and paternalistic. I think it's absurd to believe that one must have a master's degree in genetics to understand the implications of sequencing one's genome.

I am with Keith on this issue. As long as it is a step in what we think the natural evolution of sequencing is/should be, I am fine with the rich and famous getting their genomes sequenced, although the Harvard criteria do seem a little odd.

I'm guess I didn't make my point very clear. I'm not opposed to rich or famous people getting their genome sequenced. If they can pay for it, or a company wants to use it to advertise a technology, that's fine. I do have some reservations about making the data public - but mostly because of their offspring.

I said that the IRB was elitist and paternalistic.

I think that I and many people are capable of understanding what it would mean to have our genome's sequenced and I think the IRB went overboard in requiring a master's degree.