The book of life

The book of life, the most wondrous map ever produced, the instruction manual for building and operating people — the analogies that flowed during the White House ceremony Monday announcing the completion of the first rough draft of the human genome conveyed both the scope of this epochal scientific achievement and the transforming medical progress that lies ahead.

Lurking in the background at the gala event was ethics, not quite spoiling the party, but casting a definite pall.

The scientists participating in this public-private partnership were quick to point out that theirs is but an intermediate product, a rough draft, a low-resolution map, an owner’s manual but not a full-blown schematic. Of the book of life’s 3.1 billion scattered pages, only 97 percent have been found, only 85 percent are probably in the right order, only half are certainly in the right order. Much writing, editing and spell-checking remains.

Still, in the voyage of exploration that began 144 years ago with the pea-plant experiments of Mendel, that advanced with the discovery by Watson and Crick in 1953 of the DNA double helix, this is no mere stepping stone, but a launching pad. Once the genetic code is fully spelled out — scientists say it could be several years, perhaps a decade — the sequences that generate the proteins that control the body will be revealed, as will the sources of genetic variation between people, as will the causes of diseases and disorders. From there will come new and miraculous drugs, precise and individual-specific diagnoses, cures for cancer, the eradication of other genetic-based scourges.

And from there will come unprecedented opportunities for abuse of this most personal of information. Surveys show that nearly half of Americans have deep concerns about this Human Genome Project, and not just about the sci-fi prospect of factory-built superbabies or the hideous pre-natal culling of those whose book contains a typo or two. The immediate concerns aren’t futuristic, but of the here and now — discrimination in insurance coverage and employment.

The civilian federal workforce is protected from such discrimination already by executive order of President Clinton. Congress has already passed one law that provides some protections against genetic discrimination in group health insurance plans. Several bills are now awaiting congressional action that would strengthen those kinds of protections for a broader segment of the public. Lawmakers must proceed on the principle that nothing less that full protection and unalienable privacy is acceptable.

But the law in this most serious of matters must not be forced to chase down every loophole and dodge that can be imagined. Though glossed over for the White House ceremony, the obvious tension between the partners here — the governments of the United States and Britain and the Celera Genomics Corp. — springs from a disagreement on treating intermediate research findings as public property or private. So the question remains whether royalties from the book of life will profit mankind or shareholders — and whether it will include a preface on ethics.