Don't Label Me and the Tragedy of the Anticommons.

At the AAAS conference, populated largely by academic scientists (people who live and die by government largess) and journalists, Collins the bureaucrat is a hero and Venter the entrepreneur is, well, not a hero. For example, after Venter's speech I dined with several prominent theologians who groused about Venter's profit motive and expressed skepticism about his efforts to obtain patents from Celera's discoveries. I asked my dinner companions what a genetic patent actually was, and they responded that patents gave Venter ownership of human genes. The notion of a limited monopoly granted for 20 years for a useful and novel invention seemed beyond them. They didn't appreciate the point of patents is to encourage inventors to disclose information for the public benefit such that other people would be able to duplicate their inventions/discoveries. No trade secrets. The public project leaders complain that Venter used their public genome maps to guide the completion of Celera's version of the genome. They fail to mention that the public project eventually adopted many of the techniques for sequencing that Venter and Celera pioneered.

Anyway, Venter's plenary was an overview of the last 10 years of achievement. He had the temerity to remind the people who had opposed him and his ideas just how wrong they had been. In 1992, with the backing of venture capital, Venter left the National Institutes of Health to found The Institute for Genomic Research (TIGR) as a private research institute to look for genes. In 1994, TIGR submitted a funding proposal to the National Institutes of Health for a project in which TIGR would sequence in one year the entire genome for that laboratory favorite, the E. coli bacterium. The NIH refused to fund the grant on the grounds that TIGR's proposal couldn't possibly work. Venter published the E.coli sequence in Science a few months later.

When Venter approached the fruit fly consortium (another lab standard), the response was different; they enthusiastically embraced the proposal and in 9 months, the full sequence of the fruit fly was available. At the AAAS, Venter mused that given the improvements in technology, Celera could now sequence the fruit fly genome in six weeks and the bacterium H. influenzae (the first free-living organism TGIR--or anyone--ever sequenced) in one morning (down from nine months). Yeast, he said, would take most of a day to do now. He pointed out that more than half of the genomes sequenced so far have been done by him and his company.

Venter reminded the audience of what had been reported about the human genome, but he also went beyond those detail to discuss other findings. He pointed out that the partial genome of the chimpanzee, our closest evolutionary relatives, isn't very useful because "it's like having just another human genome." At this stage of genomic research differences between genomes tell scientists more than do similarities. Preliminary data have the chimp genome differing from ours by 1.3 percent. Venter also pointed out that the genome records the evolutionary history of our species. For example, chromosome 18 appears to be a double of chromosome 20, whose DNA has been added to by four additional events.

Venter noted that a variant version of the gene that codes for CCR5 receptor, which resists HIV infection, appears in 9 percent of Caucasians and in only 0.1 percent of blacks. The higher frequency of this HIV-resistant version in Caucasians may be because this version also helped European ancestors to survive the Black Plague when it swept through Europe 700 years ago.

Celera is now turning its attention to proteomics and is hoping to develop new cancer diagnostics based on detecting tell-tale proteins that would detect cancers at their inception. The night before, when Collins had finished speaking, the crowd leapt to its feet in approbation. When Venter finished, it took a moment but eventually the audience gave him his due, a rousing standing ovation.

That's how the evening ended, but the morning had begun with public policy.

"The ethical, legal, and social implications of the human genome project are profound," declared Rep. Louise Slaughter (D-N.Y.) at a morning session of the Genomics Seminar. Slaughter was at the AAAS meeting to plump for the bill she just introduced in Congress last week, H.R. 602, the Genetic Nondiscrimination in Health Insurance and Employment Act. The bill has some 154 bipartisan sponsors in the House and 17 in the Senate for a companion bill.

Among other things, Slaughter's bill would "prohibit insurers from restricting enrollment or changing premiums on the basis of predictive genetic information or genetic services and ban health plans and insurers from requesting or requiring that an individual take a genetic test, or reveal the results of such a test."

The bill would also "prohibit employers from requiring or requesting disclosure of predictive genetic information, and allow genetic testing only to monitor the adverse effects of hazardous workplace exposures." Both health insurers and employers would be subject to strict civil penalties for violations and insurance clients and employees could sue for damages.

The fact is that every human being has genetic glitches which will have health consequences. Francis Collins estimates that each of us typically has around 40 such glitches. One of the problem with Slaughter's bill that while it prohibits insurers from gaining genetic information it doesn't stop would-be clients from obtaining such information. This unequal information status would allow clients to game the system. If insurance purchasers know through genetic testing that they are likely to come down with a disease they can buy gold-plated insurance coverage at relatively cheap rates. The principle of insurance is that individuals are protecting themselves from unforeseeable losses and misfortunes. Proposals like Slaughter's is an incremental step toward ultimately transforming insurance into a social welfare program.

Slaughter explained that she had proposed the bill because "we wanted public policy, probably for the first time in the history of the Republic, to keep pace with scientific progress." Of course, the country doesn't seem to be doing too badly because Congress lags behind in responding to scientific advances.

Craig Venter recounted a story from University of Pennsylvania bioethicist Arthur Caplan. Caplan testified before the Pennsylvania legislature on some proposed anti-cloning legislation. Caplan decided to poll the assembled lawmakers and asked them, Where did they think their genomes were located? One third of the solons replied that it was in their brains, one third thought it was in their gonads, and one third had no idea. Can we really trust these sorts of people in Congress to make sensible laws governing fast-moving, new technologies?

Another abiding problem is that smart people like Collins and Venter use their well-deserved scientific authority to endorse public policy proposals in areas in which they have no special expertise. Of course they understand the science and the technologies, but that doesn't give them any insight into how people will use them later--their guesses are no better than anybody else's, and perhaps even worse. With regard to how insurance markets should operate, Collins and Venter are simply not experts. It was particularly disheartening to hear someone as famously entrepreneurial as Venter declare that "universal health insurance seems like a very logical solution" to the specter of genetic discrimination. Universal health insurance would mean the death of the genomics revolution as government rationing and regulation took hold of the health care system.

The historical record shows that people acting through markets have generally been highly successful in protecting their interests. Perhaps genomic information will push health insurance markets into operating something more like life insurance markets do: Purchasers buy policies for long durations. The inception of a new technology is a singularly inappropriate moment for government to interfere with its development. If government gets involved now, it will take decades to unravel the mistakes that it makes . Keeping to the public policy theme of the morning, John Doll, who heads up the federal division that handles biotech and pharmaceutical patents, lectured on DNA patenting. It would have been good for the theologians I dined with to have attended this meeting. Doll clearly explained the new guidelines for patenting biotech inventions and discoveries.