What We’re Made Of

Science, Politics, and the Human Genome
By Robert Cook-Deegan
W.W. Norton, 416 pp.

First, a brief refresher in rudimentary molecular genetics. Indulge me.

The stuff of heredity, you might recall, is a long, complex, double-helix called deoxyribonucleic acid (DNA), which coils itself into structures known as chromosomes. DNA is made of four components – nucleotides called adenine, thymine, cyostine and guanine – a single strand of which looks schematically like a conga line of alphagetti: G-G-A-A-T-T-A-T-C-C-T-A-A-G-C-G-A-T-C-T-A-G-G-T-G-A-C . . . and so on for thousands of characters.

This goobledy-gook in fact spells out discrete units of meaning. Think of a telephone directory: column upon column of seemingly random numerals, but each packet of seven digits dials up a different home or office, and always the same one. It’s infinitely more complex in the organic realm, but the principle holds. The performative packets are called genes, and these dictate the factory-assembly sequence that leads from the collision of sperm and egg to a fully-formed newborn infant.

Or, to put it bluntly, we’re all just sacks of biochemical instructions.

Male or female, blonde hair or bald, brown eyes or bad ticker, aquiline profile or diabetes – crucial features of everyone’s identity are dealt from the genetic deck. Who we are when we enter the world – and much of what we’ll become – is the product of a nucleotide blueprint.

The Gene Wars is Robert Cook-Deegan’s account of the biggest, most expensive, most ambitious international undertaking in the history of biological science: the attempt to determine the nucleotide sequence of every scrap of DNA in the entire human gene pool. The Human Genome Project, as it’s known, is the Domesday Book of molecular biology.

From start to finish, the venture will take at least a decade, involve every G7 nation plus Russia and cost hundreds of millions of dollars. Beyond the fact that it’s technically feasible, what justifies such grandiose effort and expense?

As always, the best intentions. The rationale runs like this: Even though it won’t reveal which segments code for which genes, cataloguing the ticker-tape sequence of human DNA will provide scientists with a map from which to work. And then, once future researchers have determined which snippets are dysfunctional — the sequence that tragically leads to Alzheimer’s disease, for example, or Huntington’s chorea, or a host of other ailments — it might be possible to develop ways to intervene so as to right these genetic wrongs.

Skeptics, however (and there are more of them than Cook-Deegan lets on, nor are they necessarily Luddite malcontents), suspect that the Genome Project has its priorities backward, and in effect is trying to transcribe the phone book before the telephone has actually been invented. They worry that it’s not only bad for molecular biology — because it siphons funds from other pursuits and dragoons young researchers into a number-crunching exercise of mind-numbing drudgery — but bad for society, because it opens the door to potential misuse.

Suppose tests become widely available for a menu of genetic disorders, such that we can tell who’ll develop Alzheimer’s, cystic fibrosis, certain forms of schizophrenia and so on. Will such people be able to purchase private health insurance, given that the onset of their maladies is only a matter of time?

And since employers increasingly bear the cost of health insurance, might they not discriminate against the genetically-afflicted or individuals whose dependents can be shown to carry “bad” genes? The amounts of money involved are enormous, and stakes that high have a way of steamrolling even the best of intentions.

As well, much of the research is being driven by the lure of patentable discoveries, which opens yet another ethical can of worms. Should it be possible to patent the discovery of specific genes, with the result that portions of the human genome will become the intellectual property of private corporations? And why should taxpayers be underwriting a research effort geared to making the researchers rich?

In fairness, Cook-Deegan addresses such questions, and these chapters are the book’s most interesting. Nonetheless, he doesn’t seem terribly concerned, trusting in the rise of “bio-ethics” review bodies to keep the research and its applications on the straight and narrow.

The bulk of The Gene Wars, however, is devoted to neither the details of the lab work nor to the moral dilemmas it poses. It concentrates instead on the Genome Project’s bureaucratic administration and the “wars” referred to in the title are largely turf fights between various research organizations over who will direct the project and according to what plan.

In principle, this should be a welcome approach, since the administrative aspects of science are all too often overlooked, especially in popular accounts. And anything as ambitious as the Genome Project requires an administrative structure as elaborate as the investigative effort itself. Research funds have to be raised and disbursed. The work of scores of different laboratories has to be co-ordinated. Hefty egos have to be handled. Questions of copyright and priority need to be resolved.

Cook-Deegan is well placed to tell such a tale, since from 1986 to 1988 he oversaw a study for the U.S. government’s Office of Technology Assessment that helped to get the Genome Project rolling. But the danger in writing a history of bureaucracy is that the result will read like the minutes of an interminable meeting. Sure enough, there are great swaths of The Gene Wars that are skull-crushingly dull.

Cook-Deegan would seem to have no eye for the telling anecdote or the illustrative detail. He just shovels the minutiae on to the page indiscriminately, as though he were being paid by the hundredweight. And there are so many organizations involved, each with its own acronym, that the prose begins to resemble a mutant genetic code of its own: NIH, DOE, NIGMS, CHGR, OMB, NCR, HHMI, CEPH, CNRS.

There’s a fascinating story in there somewhere, but never send a policy wonk to do a journalist’s job.eg

  • Montreal Gazette July 23, 1994