ISIS Recoding Life Project

Let me just give one quick illustration of what some of the effects of this speculative economy look like. The chart here compares the percentage change in the valuation of Celera (in blue), Millennium Pharmaceuticals (in gray), and deCODE (in pink), all against the baselines of the Dow Jones and Standard and Poor's indices that run in dark blue and red close to the x-axis, over the one-year period from February 2000 to February 2001. I don't want to read too much into this, and I'd advise you to never take investment advice from a historian of science, but it does suggest how the media matters when it comes to the value of the genome and its possible, promised future spin-offs. Celera's value is the most volatile, a value pegged almost entirely to the media stories about the race to the complete sequence of the human genome - and having the complete sequence first is pretty much the only asset of Celera's that seems to have mattered to investors. Celera's valuation hits its greatest percentage increase in early March 2000, at the greatest expansion of the bio-bubble, plummets along with everybody else's in mid-March 2000 as a swarm of investors mis-read and mis-understood Clinton and Blair's ambiguously worded announcement concerning the patenting of DNA sequences, and never really quite recovers, even with the anticipation preceding the White House media hoopla about the completion of the human genome in June 2000. Celera ends up suffering the greatest percentage swing of the three.

DeCODE in pink debuts in July 2000 in the middle of the graph, raising a respectable $194 million, but as a kind of one-trick pony - with the one trick being both the supposed homogeneity of Iceland and its one alliance with Roche - it can't sustain anything more than the occasional rise in a steadily declining market. All the media-induced speculation comes in advance for deCODE, and there's no sign yet of anything in reserve.

Millennium in gray does the best of the three. Its value is volatile - how could it be otherwise, in such a future-oriented science and business? - but less so than the others. Even though it issues almost weekly press releases about its most recent achievements, it's not in the direct media glare that Celera found itself in, and it was never seen as so dependent on one major resource like having the complete human genome sequence in its databanks. Rather, it has a relatively proven track record of research on multiple genes for multiple conditions, has numerous and real scientific publications, and has multiple alliances with multiple pharma companies, including Roche, rather than being completely dependent on just one. So while the media certainly matter for genomics and other story stocks, it matters only in interaction with the science and business fundamentals.

Before I conclude, I'd like to address one more set of stories illustrating the vital effects that occur at the margins of the media and the speculative economy of the late 20th century. These stories - about evoving definitions of informed consent - place genomics within a larger context of people's attitudes toward and participation in biomedical research, and changing principles and protocols of informed consent. And by the "people" in "people's attitudes toward biomedical research," I include scientists, as you'll see.

In my brief discussion of deCODE and the social volatility it has caused in Iceland, I didn't mention the controversies that have polarized the biomedical community and Iceland society at large over the departure from traditional principles of informed consent in biomedical research. Einar Arnason, the population geneticist who has questioned the homogeneity of the Icelandic population, lost his position on Iceland's National Bioethics Committee, along with all the other members the committee, in the summer of 2000, when they were all summarily dismissed by the Minister of Health. The NBC had modeled new Icelandic informed consent procedures on those used by such organizations as the American Society for Human Genetics, and these were procedures that deCODE did not want to follow; deCODE demanded Arnason's recusal from any matter loosely related to deCODE before the committee, on the basis of letters he had written to the media, the New York Times and the Times of London. The Minister of Health simply disbanded the whole lot, and reappointed a new National Bioethics Committee. This is one way in which democratic government actually works in Iceland.

But the story I want to close with comes from our own, U.S. National Bioethics Advisory Commission. It comes from a discussion not of genomics per se, but about what will happen to informed consent protocols in an era in which many U.S. citizens have come to expect and demand access to the newest, most experimental drug therapies - a trend that will undoubtedly intensify in the age of pharmacogenomics and its promise of individualized drug treatments - as we anticipate drugs of the future. The story illustrates, I think, the subtle but powerful ways in which the publicity-generating machines of biomedical research and the current speculative climate in the stock market work at the margins of scientific imagination and practice. It also illustrates how scientists themselves can often be the most sensitive readers of these open reading frames.