How Much Benefit from the Human Genome Project?

Ten years ago researchers finished the first sequencing of an entire human genome. To mark the anniversary, Eric Green, the director of the National Human Genome Research Institute at the National Institutes of Health, spoke to an unnamed reporter at the New York Times. Here is the final question of the interview:

What about the naysayers who [say], “Where are the cures for diseases that we were promised?”

I became director of this institute three and a half years ago, and I remember when I first started going around and giving talks. Routinely I would hear: “You are seven years into this. Where are the wins? Where are the successes?”

I don’t hear that as much anymore. I think what’s happening, and it has happened in the last three years in particular, is just the sheer aggregate number of the success stories. The drumbeat of these successes is finally winning people over.

We are understanding cancer and rare genetic diseases. There are incredible stories now where we are able to draw blood from a pregnant woman and analyze the DNA of her unborn child.

Increasingly, we have more informed ways of prescribing medicine because we first do a genetic test. We can use microbial DNA to trace disease outbreaks in a matter of hours.

These are just game changers. It’s a wide field of accomplishment, and there is a logical story to be told.

There you have it. The head of the Human Genome Project, a very big deal, says in an oblique way that the project has had little practical benefit so far. Note the present tense: “We are understanding cancer”. Nothing about decreasing cancer. In a short discussion of benefits, he mentions microbial DNA. In a short discussion of benefits, he says, “We are able to draw blood from a pregnant woman and analyze the DNA of her unborn child.” Genetic tests of fetuses are not new. I think he means that the number of rare genetic diseases that can be detected has increased (by how much?). Well, yes, not surprising. It is an increase of something that was already happening and helps only a tiny number of people. Not a “game-changer”.

3 Replies to “How Much Benefit from the Human Genome Project?”

  1. What is a reasonable time frame to expect successes from a project like this?

    Seth: I think a fair comparison is with (a) other ways the money might have been spent (e.g., how much would these other projects have accomplished in the same time?) and (b) claims made when the money was being asked for.

  2. At least the science was, I presume, sound. Compare with the “climate scientists” and renewable energy people, who not only waste the money but do lousy, indeed mendacious, science into the bargain.

  3. Would you bemoan the work of early cartographers for not being able to predict ocean currents? There’s certainly a lot of hubris around mapping the genome, but I think that we first need a map before we can begin to make any sense of the territory. Picking nits with the map-makers over how they justify their work certainly isn’t helping.

    Seth: They think disease has a lot to do with genome, I don’t. I don’t think it makes your point of view more persuasive to call a different point of view “nit-picking”.

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