What We Should Worry About

By Frederic Golden and Michael D. Lemonick Sunday, June 25, 2000
    • Who finishes first is not as important as what happens next, says Eric Lander, head of the Whitehead-M.I.T. Center for Genome Research, one of the five centers of the Human Genome Project. The important issues, he told TIME in a wide-ranging interview, are as much social and philosophical as they are scientific.

    Here's what Lander says really matters:

    --PRIVACY There will be a real temptation to pry into others' genomes. Say it's 1984 and an enterprising reporter gets hold of Ronald Reagan's cocktail napkin, analyzes the DNA he left behind, then publishes the news that the President is at risk for Alzheimer's disease. Or, say, your employer takes a blood sample for a physical exam but decides to check risk factors for manic depression. We need laws guaranteeing absolute privacy of your genomic information. You may choose to waive your privacy--say, if you want to get special insurance for cancer risk. But the choice should be yours.

    --GENETIC DETERMINISM People love to oversimplify genetics, saying we have a "gene for cancer" or a "gene for diabetes." But the fact is, genes determine only so much. Identical twins have identical genomes, yet one may develop juvenile diabetes and the other typically doesn't. Understanding the role of genes should help pinpoint environmental factors and teach us how to avoid genetic predispositions. But people tend to invest genes with a determinism that isn't justified by science.

    --PATENTING The Patent Office has set the bar so low that you can get a patent with only a fragmentary description of a gene's structure and no idea at all of the gene's function. This ends up discouraging future research into how to use the genes to cure disease, which is a harder and much more important goal. Even more modest applications--eliminating the side effects of drugs, for example, by screening them against a complete set of human proteins--could be blocked by a sort of Balkanization of gene patents.

    --GERM-LINE MODIFICATION This is the big one, the question of whether it's right to modify the genetic code so that people pass on particular traits to their children. I find it unsettling that we have this 3.5 billion-year-old genetic text we're only now beginning to read, and already we're saying, "Hey, I think I can improve on this!" That's breathtaking hubris. There's a deep moral issue involved in all this. Once you start to see human beings as a product of manufacture, you cross a line and you may never be able to return. For now, I'd like to see a ban on modifying the human germ line. Society could choose to repeal the ban if we ever became technically adept enough--and morally wise enough--to use it properly. But we should be required to rebut a strong presumption against tampering.

    --OUR HUMAN ROOTS The genome is a history book showing that the entire 6 billion-member human species traces back 7,000 generations to a tiny founding population of some 60,000 people. Our species has only a modest amount of genetic variation--the DNA of any two humans is 99.9% identical. I'm not such a Pollyanna as to think that merely knowing this will put an end to ethnic strife, but I hope it will influence our thinking. The more we understand the human genetic tapestry, the more we see that our similarities outweigh our differences.