Patent Pending

Consumer-driven science and the new eugenics.

  • Plus: Where New Genes Come From

    We are in the midst of a historic transformation from the Industrial Age to the Biotech Century, and nowhere will the new genetic commerce likely have a more profound impact than in human medicine. Human gene therapy raises the very real possibility that, for the first time in history, we might be able to re-engineer the genetic blueprints of our species. The prospect of creating a new eugenic man and woman is no longer just the dream of wild-eyed political demagogues but, rather, a soon-to-be-available consumer option and a potentially lucrative commercial market.

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    The new eugenics movement bears little resemblance to the reign of terror that culminated in the Holocaust. In place of shrill cries for racial purity, we have pragmatic talk of increased economic efficiency, better performance standards, and improvement in the quality of life. The old eugenics was steeped in political ideology and motivated by fear and hate. The new eugenics is spurred by market forces and consumer desire.

    The scientific tools are now becoming available to manipulate the genetic instructions in human cells. The new gene-splicing techniques will make it potentially possible to transform individuals and future generations into "works of art," continually updating and editing their DNA codes to improve their physical, emotional, and mental performance.

    Genetic manipulation is of two kinds. In somatic therapy, intervention takes place only within somatic cells—which compose the body's tissues and organs—and the genetic changes do not transfer into the offspring. In germ line therapy, genetic changes are made in the sperm, egg, or embryonic cells and are passed along to future generations.

    The possibility of programming genetic changes into the human germ line to direct the evolutionary development of future generations brings society to the precipice of a eugenics era with consequences—both to the biology of our species and to civilization—that are largely unpredictable and unknowable. Even so, proponents of the therapy are anxious to take the gamble, convinced that controlling our evolutionary destiny is humankind's next great social frontier.

    Couching their arguments in terms of personal health, individual choice, and collective responsibility for future generations, they say parents ought to have the right to make choices on how best to protect the health of their unborn children. To deny them the opportunity to take corrective action before or just after conception would be a serious breach of medical responsibility. Why, they ask, should countless individuals be subjected to intrusive somatic therapy when the gene responsible for their diseases could be more easily eliminated from the germ line, at less expense, and with less discomfort? And the health costs to society also need to be factored in, say advocates, pointing out that caring for generations of patients suffering from Parkinson's disease or severe Down's syndrome will probably be far costlier than simple prevention through germ line therapy.

    Prenatal testing has already prepared the way for the acceptance of genetic intervention and commercial eugenics. Amniocentesis, the oldest and most widely used method, dates back to the 1960s. Although prenatal tests can detect genetic disorders, as of now, less than 15 percent of those disorders can be treated. This means that for the vast number of seriously debilitating or fatal diseases that are testable in the womb, the only choices are abortion or bringing the baby to term.

    Now, though, a cutting-edge technology called pre-implantation genetics allows parents an alternative. A child can be conceived in vitro, then genetically screened at the embryo stage for genetic diseases before being implanted into the mother's womb. The first live birth of a child resulting from this technique occurred in 1992 in London. The child had been screened in the embryo stage for cystic fibrosis. Researchers in several countries are now proceeding with pre-implantation genetic screening for other diseases, including sickle-cell anemia and Tay-Sachs.

    "Parental eugenics" is likely to increase as embryo implantation methods become cheaper and more reliable. Still, these first rather crude procedures are only the beginning of a wholesale change in the relationship between parents and their unborn children that is sure to redefine the very notion of parenthood. Parents will be increasingly forced to decide whether to take their chances with the traditional genetic lottery and use their own unaltered eggs and sperm knowing that their children may inherit some "undesirable" traits. If they choose to go with the traditional approach and let genetic fate determine their child's biological destiny, they could find themselves culpable if something goes dreadfully wrong in the developing fetus. Society might consider them morally, if not legally, liable for having failed to do their parental duty and avail themselves of corrective intervention.

    Indeed, proponents of human genetic engineering argue that it would be cruel and irresponsible not to use this powerful new technology to eliminate serious "genetic disorders." However, if diabetes, sickle-cell anemia, and cancer are to be prevented by altering the genetic makeup of individuals, why not proceed to other less serious "disorders": myopia, colorblindness, dyslexia, obesity, left-handedness? In the end, why would we ever say no to any alteration of the genetic code that might enhance the well-being of our offspring? According to a 1992 Harris Poll, 43 percent of Americans "would approve using gene therapy to improve babies' physical characteristics."

    While the notion of consumer choice would appear benign, the very idea of eliminating so-called genetic defects raises the troubling question of what is meant by the term "defective." Ethicist Daniel Callahan of the Hastings Center observes that "behind the human horror at genetic defectiveness lurks…an image of the perfect human being. The very language of 'defect,' 'abnormality,' 'disease,' and 'risk' presupposes such an image, a kind of prototype of perfection."

    Do we then come to see ourselves as miswired from the get-go, riddled with errors in our code? If that is the case, against what ideal norm of perfection are we to be measured? If every human being is made up of varying degrees of error, then we search in vain for the norm, the ideal. The question, then, is what are the potential consequences of embarking on a course where the final goal is the "perfection" of the human species?

    The extraordinary advances in genetic engineering are being accompanied by a resurgent eugenic sociology. Researchers are already linking an increasing number of mental diseases to genetic disorders. Some scientists go further, suggesting that mood, behavior, and personality traits are all genetically predetermined and only slightly modifiable by the environment. Even more controversial, a growing number of molecular biologists contend that antisocial and criminal behavior is genetically linked.

    This accumulating body of studies is having an effect on public discourse. From the end of World War II through the 1980s, social scientists contended that we could address social evils only by instituting changes in the environment. But now, many scientists are becoming increasingly convinced that the problems lie not with the institutions that humanity fashions, but with the way humanity itself is fashioned.

    The shift is attributable, in part, to the intense interest generated by the Human Genome Project (the ambitious, government-funded program to map the estimated 100,000 genes that make up the human species) and the steady barrage of hyperbolic statements in the media by its most prominent boosters, such as biologist Walter Gilbert, who calls it "the Holy Grail of genetics." Much of the rhetoric is no doubt politically motivated, designed to keep public attention focused on the great potential benefits that are likely to flow from the project—and to assure its continued congressional funding. For many in the government and the private sector, the $3 billion-plus investment in the Human Genome Project seems a small price to pay for our personal and collective well-being. As one government evaluation puts it, "One of the strongest arguments for supporting human genome projects is that they will provide knowledge about the determinants of the human condition," including those diseases "that are at the root of many current societal problems."

    This argument would have been unthinkable just a generation ago. Among scientists, though, genetic causation is quickly gaining currency. Writing in the journal Science, editor Daniel Koshland points to the growing ranks of the homeless, many of whom suffer from mental disease, as an example of the need to tackle social problems at their genetic roots, through preventive measures. Researchers are now also conducting studies on the genetic links to criminal behavior.

    Societies have always been divided between the haves and the have-nots. Race, religion, and nationality are all well-worn methods of categorization and victimization. Now, with the emergence of genetic engineering, we're entertaining the prospect of a new and more serious form of segregation: one based on genotype.

    Insurance companies already practice genetic discrimination. In one case, a 24-year-old woman was refused life insurance because her family had a history of Huntington's disease, despite the fact that she'd never been tested for the disease. Millions of people may be branded with a lifelong "genetic scarlet letter," with consequences that extend far beyond the issuance of insurance policies.

    Equally troubling is the prospect of discriminatory genotyping of racial and ethnic groups. As scientists gain more information on the workings of the human genome, they will succeed in identifying an increasing number of genetic traits that are unique to specific groups, opening the door to the possibility of genetic discrimination against entire peoples.

    Segregating individuals by their genetic makeup represents a fundamental shift in the exercise of power. Those families who can afford to program "superior" genetic traits into their fetuses at conception could assure their offspring an even greater biological advantage, and thus a social and economic advantage as well.

    The emerging biotech age promises to complete the modernists' journey by "perfecting" both human nature and the rest of nature, all in the name of progress. Few people would oppose genetic surgery to eliminate crippling diseases or the engineering of new plants and animals to alleviate world hunger. Biotechnology has much to offer. But, as with the introduction of other technological innovations throughout history, the final costs have yet to be calculated. The new technology raises a troubling political question: To whom should we entrust the authority to decide what is a "good" or a "bad" gene? The government? Corporations? University scientists?

    From this perspective, we would be hard-pressed to point to any institution or group of individuals we would entrust with decisions of such import. If, however, we were asked whether we would sanction new biotech advances that could enhance the physical, emotional, and mental well-being of our progeny, many of us would not hesitate for a moment to add our support.

    The biotech revolution is, after all, the ultimate consumer playground, offering us the freedom to recast our own biological endowment and the rest of nature to suit whatever whim might move us. More important, the new genetic technologies grant us a godlike power to select the biological futures and features of the many beings who come after us—the greatest shopping experience of all time.

    Cell by cell, we may end up surrendering our humanity to the marketplace, bartering ourselves away, a gene at a time, in pursuit of our own engineered perfection.

    This article is adapted from Jeremy Rifkin's new book, The Biotech Century: Harnessing the Gene and Remaking the World. Rifkin is president of the Foundation on Economic Trends in Washington, D.C.

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