Well, the piling on the human genome project continues, it seems at an accelerating pace. I think most of this comes from the fact that we are in the range of the 10 year anniversary right now. Here are some examples of recent stories suggesting the human genome project (or projects, if you count the public effort and Craig Venter’s effort as separate) have had little benefit:
- 7/31/10: The Human Genome Project: 10 Years Later, Progress but Still a Puzzle – WNYC. Interesting piece by Sarah Kate Kramer discussing the limited clinical value of the HGP. Includes some criticisms of personalized genomic medicine.
- 7/29/10: Spiegel interview with Craig Venter with the headline “We have learned nothing from the genome”. Has lots of interesting tidbits. Love the Venter line “Well, nobody likes to be beaten — by superior intelligence, planning and technology. That gets people upset.” But I note Craig emphasizes the basic science value of human genome data.
- 7/6/10: Public Radio mini story about Mike Mandel’s article on the failure of the human genome project.
- 6/12/10: Nick Wade’s NY Times article on “A decade later, genetic map yields few new cures“. In this Wade discusses many of the issues with both the sequencing of the human genome and some of the spinoff projects (and also butchers some evolutionary biology for which I gave him a twisted tree of life award).
Certainly, contrary to the suggestion of some of these articles, there have been some practical benefits that have come directly or indirectly from human genome sequencing. But equally certainly, these critiques have a segment of truth to them in that the practical benefits have been few and far between.
Normally, one would not expect too many direct practical benefit to come from this kind of science project. But alas, the problem here is that many of the key players (e.g., Eric Lander, Francis Collins, Craig Venter) in the sequencing of the human genome(s) oversold the potential benefits that could come from the sequencing. In a way, it was their job to oversell the sequencing, since each was a cheerleader in ways for getting others to do a lot of work.
Many people knew at the time that this overselling was going on. It was talked about extensively at various genome conferences and even occasionally in the press and scientific literature (boy do I wish I had had a blog then, because I was one of those people at conferences practically begging people to not oversell the benefits of the project – I now even give out an “overselling genomics award” on my blog ). The cautionary voices were mainly saying that there was no need to oversell the project and that we should stick to the benefits of “knowing” ourselves and not guess about how it will lead to immediate cures for diseases. And many said “If you oversell this now, it will come back to bite you“
The problem here is that the human genome project should never have been sold as a means to a series of practical ends. It should have been sold as a massive basic science project, much like going to the moon or building a giant linear accelerator. That is, the human genome project was, and still really is, about knowledge. It is about knowing ourselves. It has enormous potential benefits in all sorts of areas, like human medicine. It should greatly aid and abet studies of human biology and genetics and disease. But given that benefits that come from such studies are impossible to predict, the human genome project should have been presented in a different way. We need to discuss more in public why basic science is important even if one cannot predict what the benefits are.
In many ways, this is very much like the “war on cancer” which some have argued failed because we still have cancer killing a lot of people. But this is off base because in fact the war on cancer has provided us with an incredible baseline of information about the biology of cancer. We need to do a better job in all of these cases of defending the need for knowledge, and discussing how fighting cancer and curing diseases is not the same as building a big bridge or road.
The best person discussing this issue for the last ten or so years in my opinion has been Harold Varmus, who was once the head of NIH and is now the new director of the National Cancer Institute. I have heard him repeatedly defending the “war on cancer” in terms of its basic science benefits. For example see his comments on Science Friday 1/30/2009 and 7/16/2010. There just have not been too many people doing a good job of this with genomics. Venter and Collins have been OK here and there. But we need more.
On a related note, we probably should have more discussion about how the money spent on the genome project and the war on cancer pales in comparison to money we spend on other things (e.g., interest on the national dept, wars, etc) but perhaps that is a side discussion.
Most importantly, we need to bring out to the public more of a discussion of the benefits from basic science. Here are some useful resources if you want to try and help:
- CERN – Benefits of basic science
- The unexpected benefits of basic science
- Inquiring Minds
- Beyond Discovery
- Remarks by the President at the National Academy of Sciences
- In Defense Of Basic Science : NPR
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UPDATE
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