In 1993 The New York Times ran a story, rich with historical irony, about a community of Orthodox Jews who have a program of genetic testing for young people. The goal of the program is simple: to eliminate common inherited diseases such as Tay-Sachs and cystic fibrosis. Among Ashkenazi Jews, one person in twenty-five is a carrier of the Tay-Sachs gene, and one person in twenty-five is a carrier of the cystic fibrosis gene. When people with those genes marry, there is a one-in-four possibility in each pregnancy that a child will be born with the disease. Tay-Sachs is an incurable, fatal disease in which the child eventually becomes blind and paralyzed. Individuals with cystic fibrosis must cope with lifelong breathing and digestive problems, and about half of them suffer a shortened life span.

So, every year, representatives of the Committee for Prevention of Jewish Genetic Diseases go to the Orthodox high schools and offer the students a blood test. Those tested are given an identification number, which is registered at the program's central office. When a boy and a girl are being considered by the community's matchmakers as likely prospects to be united in marriage, the next step is to call the office hotline with their identification numbers. The office then reports either that the match is compatible, or that the young people both carry a recessive gene and would be likely to produce children with one of the diseases. The ancient Jewish tradition of matchmaking, in short, has moved into the bio-information age.

The members of the community were apparently quite satisfied with the program, which the religious leaders had named Dor Yeshorim, Hebrew for "the generation of the righteous," and the practical results were impressive: "Today," a report states, "with Dor Yeshorim's continual testing, new cases of Tay-Sachs have been virtually eliminated from our community." [1] The program was being expanded to test for several other diseases, including cystic fibrosis. But several outside ethicists interviewed by the Times were quite worried about it - because, by any name, it is eugenics. [2]

"Eugenics" is one of the most fearsome, explosive words in the whole bioethical dialogue. The media frequently carry reports on research leading toward germ-line therapy - treatment that would alter an individual's genome and thus the traits that he or she would pass on to future generations - which borders on the subject of eugenics. Sometimes the e-word is actually used, and it is always with the strong implication that eugenics must not be permitted to happen. These statements are quite understandable and their sentiments are commendable, but they are also misleading. They give the impression that eugenics went away - which it didn't - or that it can be excluded from the future - which it can't. Eugenics is part of life in our time, and the challenge is to understand that and manage it wisely.

The word itself - from a Greek root meaning "well born" or "of good heredity" - was coined in 1883 by Francis Galton, Charles Darwin's brilliant but somewhat erratic cousin. Galton proposed to take evolution to its next logical step, from theory to practice, and began to design a rather air-headed program for breeding a superior race of human beings.

Eugenics became a wildly popular cause, as trendy in its time as environmental protection is today. It was championed with equal enthusiasm by right-wing social Darwinists and left-wing socialists such as George Bernard Shaw. It spread to the United States, where generous donors funded research centers such as the Race Betterment Foundation at Battle Creek, Michigan.

Eugenics went berserk in the United States long before it was taken up by the Nazis in Germany. It fed on American enthusiasm for progress, and whispered darkly to nativist fears that the good old American gene pool would be contaminated by the new immigrants. The result was a burst of programs for compulsory sterilization of criminals and mental patients, restrictions on immigration, and laws prohibiting interracial marriage. Many of those programs are now ended, the laws repealed, the research institutes gone. One of the reasons for their demise was the gradual realization that their science and mathematics were a bit shaky. We no longer believe there is any clearly identifiable genetic deficiency such as "feeblemindedness" that is caused by a single gene. Statisticians have calculated that even if such a defect could be clearly identified and all its carriers prevented from breeding (as some eugenic enthusiasts proposed), it would take over 8,000 years to get their numbers down to 1 in 100,000. [3] Then there was the unimpressive example of Nueva Germania, a colony established in Paraguay by Elizabeth Nietzsche (sister of Friedrich). She populated her eugenic utopia with splendid specimens, chosen for the "German purity of their blood," and encouraged their selective breeding toward a race of supermen. The results - still visible in that area - are blond and blue-eyed Paraguayans, most of them poor, inbred, and diseased. [4] For many reasons, the idea of improving the human gene pool lost its momentum as a popular political movement.

But today, as genetic information becomes more accessible, more and more people make decisions that are de facto eugenics - whenever a couple chooses to abort a defective fetus and try again, whenever a prospective parent makes a reproductive decision on the basis of knowledge that he or she carries genes for an inheritable disease, whenever a sperm bank screens prospective donors to find what traits they carry. If eugenics is about people-breeding, about attempting to improve the genetic heritage of those yet unborn, all these meet the definition. There may well be more real eugenics going on today than when it was popular.

Most de facto eugenics is either short-term eugenics, as when people make choices about which pregnancies to terminate or carry to term, or small-scale eugenics, as in the case of the Jewish community in New York. You can also find implicit eugenic considerations in various policies of public and quasi-public institutions. When an official in the state of California ruled that screening for one genetic defect should be offered to all pregnant women, it was with the expressed hope "that some of those who are found to have children with neural tube defects will choose not to bring them to term." [5] When the 1990 guidelines of the International Huntington Association were written, they declared that it was acceptable to refuse to test women who might be carriers of Huntington's disease unless they gave "complete assurance that they will terminate a pregnancy where there is an increased risk." [6] The sort of nation-sized breeding program that Galton and his colleagues hoped for, that Adolf Hitler and the Third Reich began to put in place - and that most people have in mind when they use the word "eugenics" - is nowhere in sight, but eugenic issues of various kinds are and will be constantly emerging in the bio-information era. As a leading geneticist, Steve Jones of University College, London, puts it: "No serious scientist now has the slightest interest in producing a genetically planned society. But the explosion in genetics means that we are soon - like it or not - bound to be faced with moral problems about whether we should make conscious decisions about human evolution." [7]

One good argument for thinking open-mindedly about de facto eugenics is the constant reality of de facto dysgenics - deteriorations of the human gene pool as a result of various social and medical interventions. Anything that medical science does to prolong the life into reproductive years of a person who is born with a genetic illness results in offspring who carry the genes for that illness. As treatments for people with cystic fibrosis improve, and as genetic therapy saves children with severe combined immunity disorder, more of those people will be able to marry and lead normal reproductive lives, and more children will be born with those genes. One prominent medical ethicist, Paul Silverman of the University of California, Irvine, warns that we may be creating a population increasingly dependent on medical care:

Curiously enough, one of the greatest forces for improvement of the human gene pool at the present time may be global migration - the very thing that was most feared by the racist eugenicists who believed immigration and interbreeding were increasing genetic defects in the American population. Jones believes, however, that these are producing a significant decrease in inherited genetic defects. "Wherever we look," he says, "one thing is clear: there has been a drop in inbreeding in human populations in the recent evolutionary past. An increase in mating outside the group is one of the most dramatic changes in recent evolutionary history. Its effects may outweigh anything that medical genetics is likely to be able to do." [9]

Since eugenic considerations were used to justify anti-immigration legislation in the past, one might reasonably argue now that the present information requires governments to eradicate all boundaries and do everything possible to increase immigration and general moving around in the service of the world's genetic well-being. I don't suppose this is a likely near-term prospect - but Jones's ideas on the eugenic effects of migration, a complete reversal of the view that once dominated Western thinking, does offer an excellent example of how radically perspectives can change in a fairly short period of time. We still have plenty of nativism, of course, but it no longer has its scientific rationale.

I suspect, however, that Jones is wrong in his guess that migration will continue to be a more potent eugenic force than medical genetics. This is undoubtedly true at the present time, but there is reason to believe that the somatic-cell stage of genetic therapy will progress rather quickly into the germ-line stage - that is, from genetic therapy that treats or cures a disease to genetic therapy that modifies the patient's reproductive genes so that the disease is not passed on to his descendants. I use the "his" deliberately here, because women are born with all the eggs they will use in their lifetimes. But in men, the sperm-producing stem cells are active throughout the reproductive years. Consequently it seems likely that the first germ-line therapy will be with a male patient. It's entirely possible that this will happen inadvertently, since some of the vectors being used to get curative genes into a patient's cells - such as the adenovirus (flu) and herpes simplex - are known to attack reproductive tissue. In other words, continued treatment of a person suffering from cystic fibrosis - aimed at getting his cells to produce the protein that relieves the typical wheezing and pneumonia - could also get the gene capable of producing that same protein into his reproductive cells, with the result that his offspring will not be born with cystic fibrosis. This is a very real possibility which, like so much of gene therapy, has both inspiring and frightening aspects. As of this writing, the Recombinant Advisory Committee is establishing a working group to study the "germ-line question." [10]

Meanwhile, several deliberate approaches to germline therapy are being tested. One way is to modify the genes of a pre-embryo during in vitro fertilization, before the embryo is implanted in the mother. Another way - already successful with animals - is to insert genes into the fetus. Yet another is to cultivate and alter male sperm, which can then be used for in vitro fertilization or artificial insemination. [11] The current prediction is that somatic-cell gene therapy will be standard medicine by the turn of the century. [12] Germline therapy may not be far behind - may not, in fact, be behind at all.

This is, without question, a serious evolutionary step, and one that will no doubt be agonizingly debated as it becomes more apparent that people are about to make it, or are making it - or have already made it. And eugenics will be a part of that debate.

Evolutionary considerations could be used now, in fact, to make a case against somatic-cell gene therapy, echoing the case that Spencer and some of the Darwinian true believers made against vaccination: that it would enable people who might otherwise have perished to survive instead and reproduce. Germ-line therapy, on the other hand, is eugenic.

I doubt that considerations of impacts on the whole human gene pool are going to be the deciding factor for people who are actually making the genetic decisions. But it seems entirely likely that some people whose families have had a long history of producing children with a genetic illness such as Huntington's disease or Tay-Sachs - histories that include enormous suffering - will choose germ-line therapy if it promises to eliminate disease from future generations. It is quite thinkable, too, that eventually some of those diseases may - through a combination of genetic screening and gene therapy - cease to be of any importance, and go the way of smallpox.

Those are real eugenic possibilities, and as time progresses they will undoubtedly become real eugenic issues that will be debated on economic, ethical, and other grounds. They have to do with a limited - yet large and important - class of disorders that have been established as genetic in origin, usually involving a single gene. They do not concern eliminating vaguely defined forms of inferiority such as "feeble-mindedness," and they do not concern breeding a race of giants and/or geniuses. They do concern real and concrete problems that people are dealing with already, and may soon be dealing with in new ways. The subject of human genetic evolution - and of human actions that may shape its course - is no longer the exclusive p rovince of utopians and racists, although undoubtedly both those constituencies will continue to be heard in the dialogue. Information about genetics is now becoming a part of daily life. And as it does, ordinary people begin to understand that many personal and political decisions have genetic consequences. Such understanding is yet another dimension of the new connections and social obligations that the present evolutionary transition creates. If this is eugenics, let us make the most of it.

For an extensive overview of, and links to, bioethics Web sites, see Pam Gannon's In Situ column "Online Bioethics Resources."

The Eugenics Movement - a brief essay on the history of eugenics in America. Includes brief passages from writings of historical eugenics figures such as Charles B. Davenport and Madison Grant, and provides a short reading list.

"A Look Back at Eugenics# - an examination of eugenics, from its historical origins to modern controversies surrounding the relationship between genetics and intelligence, behavior, etc. From The Gene Letter, a bimonthly newsletter funded by the U.S. Department of Energy and covering genetics and public policy.

Debate: Germ-Line Gene Modification - introduction to, and summaries of, two papers that take opposing positions on germ-line therapy. From the section on genetic approaches from Zygote, a developmental biology Web site. See also the germ line section. Other topics (23 in all) covered in Zygote include cellular approaches; fertilization; cleavage; axon specificity; transcription; RNA processing and translation; proximate induction; and sex determination.

Genetics and Public Issues: National Center for Genome Resources - the GPI program seeks to "integrate genetic information, biotechnology, and services into society." Sections include Genetics in the News; Genetic Odyssey; Continuing Medical Education; Education; links to other sites; and a bioethics bibliography.

On-Line Science Ethics Resources - a lengthy list of links, under topic headings such as Web Sites to Search; Centers and Programs; Individuals; and Miscellaneous. Also includes links to ethical codes of conduct: Institutional Policies; Professional Societies; and Publishing Guidelines.

Gattaca Web site - design your own child.