Creating a world with genetic haves and have-nots
By Ruth Hubbard & Stuart Newman
We have entered the era of Yuppie Eugenics. A contemporary, ostensibly voluntary form of older ideas and practices, Yuppie Eugenics is based in modern molecular genetics and concepts of “choice,” and has begun to raise the high tech prospect of employing prenatal genetic engineering. What it shares with the earlier doctrines is the goal of improving and perfecting human bloodlines and the human species as a whole.
The eugenics movement arose in the late 19th century in the wake of new scientific thinking about animal and plant breeding that culminated in evolutionary biology and genetics. While thus part of the scientifically-influenced “progressive” thinking of the time, it was based on the fallacious argument that since nature had yielded “fit” species by “natural selection” and humans had “improved” domesticated animal breeds by “artificial selection,” there was now a scientific warrant to use social and political means to discourage propagation of biologically “inferior” sorts of people. It soon gave rise to a set of State-directed programs in the United States and Europe.
The legal assault against people of “bad heredity” began in the United States with compulsory sterilization bills. The first of these was introduced into the Michigan legislature in 1897, but was defeated. A second bill, aimed at “idiots and imbecile children,” passed the Pennsylvania legislature in 1905, but was vetoed by the governor. Indiana was the first state to actually enact a compulsory sterilization law in 1907 and it was followed by some 30 others. California did not repeal its law until 1979 and, in 1985, around 20 states still had laws on their books that permitted the involuntary sterilization of “mentally retarded” persons. The United States was by no means alone. In that liberal paragon Sweden, compulsory sterilizations of “unfit” persons were performed into the 1970s. All these laws were meant to improve the genetic make-up of the population, and especially of poor people, by preventing those judged to be “defective” from passing on their “defects” to future generations.
State Eugenics reached an abhorrent extreme in the Nazi extermination programs of the 1930s and 1940s. Initially directed at people with similar health or social problems as were targeted by the U.S. and Swedish sterilization laws, these were eventually expanded to cover entire populations—Jews, Gypsies, Poles—judged by the Nazi regime to represent “worthless lives” (“lebensunwerte Leben”). While certain overt State policies such as the use of gas chambers are now avoided, “ethnic cleansing,” practiced on three continents in recent times, shows that eugenic cruelties have far from disappeared.
Technologies developed in the past three decades, however, have permitted a change in focus in the implementation of eugenics, at least in more affluent countries, from the State to the individual. Increasing numbers of diagnostic tests have been developed that enable physicians to assess some aspects of a fetus’s future health status early enough to permit termination of a pregnancy during the second or even the first trimester. Though all such predictions have pitfalls and problems, they have made it possible for prospective parents not to bear a child they expect to be too ill or disabled to knowingly make part of their family. Though the intent of these methods is to widen choice in matters of procreation, they are eugenic in that they are meant to prevent the birth of people who are expected to perpetuate certain types of inborn conditions, such as cystic fibrosis, Huntington’s disease, sickle cell disease, or phenylketonuria (PKU). Some scientists and physicians, indeed, have explicitly argued that it is wrong to permit ill or disabled people to procreate unless society is prepared to provide them with the “choice” to abort any fetus likely to manifest a condition like their own.
The new profession of genetic counseling has arisen to meet the need for information about the availability and significance of appropriate pre- conceptive and prenatal tests and about the decisions with which such tests confront prospective parents. Now a central factor in the shift of “scientific” selection from coercive state programs to socially-sanctioned personal initiatives, advice about Choice Eugenics has become a routine part of prenatal care. In fact, practitioners have been sued by parents of children born disabled for not offering such information. Meanwhile, other prospective parents complain that their obstetrician or genetic counselor was excessively insistent that they accept a prenatal test and terminate a pregnancy that was predicted to produce a disabled child. So, though Choice Eugenics is not comparable to the earlier, compulsory state practices, some people experience it as coercive. Indeed, anxiety about social disapproval can sometimes be a more compelling dictator of choice than the law.
Extending the range of such “choices” since the 1970s and increasingly in the 1990s, hospital-based, non-profit fertility clinics, as well as a growing for-profit fertility industry, have been devising new technologies and social practices and expanding the use of the traditional ones, such as artificial insemination. The basis for most of the newer reproductive practices is in vitro fertilization (IVF). Initially, IVF was intended to help women whose ovaries and uterus were intact, so that they could produce eggs and gestate an embryo, but whose fallopian tubes were missing or blocked. It involves hyper-stimulation of the ovaries to induce several ova to mature simultaneously and then extracting a few of these and incubating them with fertile sperm outside the body (“in vitro’’). Once an egg and sperm have fused and the first few cell divisions have occurred, several embryos are inserted into the woman’s uterus in the hope that at least one of them will become implanted and develop into a baby.
Since the first successful attempt, in 1977, resulted in the birth of Louise Brown, IVF has become a widely offered and virtually routine part of reproductive medicine. It is covered by some state and private insurance programs in the United States and by the national health insurance programs of other countries. In addition to its procreative potential, it also enables prospective parents to have predictive tests performed on the embryos before they are implanted. It has therefore become an option for Choice Eugenics, especially for couples who strongly object to aborting an initiated pregnancy.
The access to human embryos offered by IVF has also made the technology a point of departure for a range of previously unavailable manipulations that raise complex questions not just for the individuals they affect directly, but for society at large. The technically least challenging of these involves the participation of two women, instead of just one, in producing a child—one who produces the egg, the other who gestates the embryo. This arrangement raises the novel question of which of them is the child’s biological mother. In cases of disagreement, judges have often come down on the side of genes—hence, of the egg donor—but that simply acts out our current genomania, because it ignores the biological major role of the woman who gestates and gives birth.
The explosive proliferation of preconceptive and prenatal tests has provided more and more reasons to terminate pregnancies in the hope of a better roll of the dice. Given certain features of modern prosperous societies, there is an increasing tendency to exercise such options on the basis of notions of biological perfectibility. This tendency is transforming Choice Eugenics into Yuppie Eugenics. What was once a preventative choice has become a pro-active entitlement, exacerbated by the sense prevailing among current elites that one has the right to control all aspects of one’s life and shape them by buying and periodically upgrading the best that technology has to offer, be it a computer, a car, or a child. Because this trend enjoys broadly based, mainstream sanction in the United States, what may begin as elite yuppie-ism is poised to become more widely disseminated as the technologies become cheaper and their use becomes more routine.
Fair-minded people differ on the point at which Choice Eugenics grades into Yuppie Eugenics. For some people with congenital disabilities, much Choice Eugenics, directed to preventing the birth of people like themselves, is going too far. People with congenital disabilities typically feel whole, and consider themselves victimized not by their genes, but by disaccomodating social arrangements. At the same time, a lack of extended family and health support systems can, for many, shift the balance against “preventable diversity.” All eugenics defines some people as biologically unacceptable. Each turn of the screw en route to Yuppie Eugenics potentially excludes more and more people.
The false hope that scientists can alter an embryo genetically so as to “enhance” its potential and to make it conform to the future parents’ image of a desirable child is also part of Yuppie Eugenics. Such unrealistic expectations, built on intrinsically unreliable genetic foreknowledge as well as on unscientific notions of the correspondence of specific genes to complex traits, can tempt prospective parents to agree to novel biological manipulations that are at least as likely to introduce problems as to remedy them. Also called germ-line genetic engineering or germ-line “gene therapy,” this possibility has aroused widespread opposition. There are religious, but also secular philosophical reasons for resisting a technology that plays into the idea of the developing human as a perfectible item. The goal of perfection encourages a view of existing life as imperfect. It transforms life into an ahistorical object, without context and eventually artifactual.
Objections also center on the fact that a genetic alteration introduced into an embryo is likely to become a permanent part of the genetic endowment of the person into whom that embryo develops and thus also of all of her or his progeny. Considering that the procedures themselves are experimental and the results are unpredictable (laboratory mice on which such procedures are performed often produce progeny with malformations, behavioral abnormalities, or increased cancer rates), germ-line genetic engineering poses unacceptable risks for “persons” who have just barely been conceived. There is no justification for undertaking such manipulations. If the prospective parents of the child into whom the embryo would develop are concerned that it may not meet their expectations, they need not gestate it.
Unfortunately this insidious prospect of germline engineering has found advocates among scientists such as James D. Watson, the Nobel Prize winning co-discoverer of the structure of DNA and the first director of the Human Genome Project, and Princeton University biologist Lee Silver. In his book Remaking Eden and in numerous appearances on television and the college speaking circuit, Silver has been trying to persuade the public to get used to the prospect of a world with genetic haves and have nots that would eventually lead to separate, and intentionally unequal, human species.
Fortunately, other more responsible scientists, writers, and activists have warned about the ominous safety and social implications of following this path, and have called for a ban on producing genetically-engineered humans. Indeed many European countries already prohibit such procedures.
This makes it particularly discreditable that the American Association for the Advancement of Science (AAAS), the largest professional organization of scientists in the United States, has gone on record with a statement that dances around the hazards of germline modification without even raising the possibility of a ban. Although the panel that prepared the AAAS report considers that the time is not yet ripe for implementing inheritable genetic modifications (IGM), it leaves the door open for future uses: “Although there are major technical obstacles to developing human IGM in the responsible ways that we have recommended,” they write, “it is possible that at some time in the future scientific advances will make it feasible to undertake IGM.” The AAAS panel failed to explain that only an unethical line of research, in contravention of the internationally endorsed Nuremburg Code on human experimentation, would have to be undertaken before any assurances can be made as to the risks of these procedures.
Cloning, another experimental genetic technology touted as a new “reproductive option,” is being advocated by maverick physicians and scientists despite wide evidence of pathology in animals produced in this fashion. Some of these proponents, including a representative of the Raelians, a Canadian religious cult that claims to have received an extraterrestrial directive to clone its adherents, were given a respectful hearing at a forum at the prestigious National Academy of Sciences in August 2001.
Yuppie Eugenics also has its boosters among journalists and professional bio- ethicists. Michael Kinsley, writing in Slate (April 2000), suggested that genetic tests should eventually be used as qualifications for employment. He was seconded by Andrew Sullivan in the New York Times Magazine (July 2000), where he argued that genetic testing for future capacities is less objectionable than using SAT scores or letters of recommendation, since genetic tests are “more reliable.” Arthur Caplan, Glenn McGee, and David Magnus of the University of Pennsylvania Institue of Bioethics follow the Kinsley-Sullivan thesis to its logical conclusion when they state, in a 1999 British Medical Journal article, “it is not clear that it is any less ethical to allow parents to pick the eye color of their child or to try to create a fetus with a propensity for mathematics than it is to permit them to teach their children the values of a particular religion or require them to play the piano.” Here the intersubjective nature of the parent-child relationship is conflated with the one-way imposition of a chancy, irreversible genetic alteration during the earliest stages of embryonic development.
What is generally ignored in such prescriptions is that each gene contributes to numerous traits, and that any trait of significance depends on the functions of many different genes. Genes and other features involved in growth and development constitute integral wholes that genetic alterations are more likely to disturb than enhance.
Yuppie Eugenics builds on the mirage that applications of genetics and biotechnology will be able to make us more perfect as well as to counter all forms of pain, illness, and death. The best way to restore us to sanity is to remember that genetics will never tell us what it takes to make a worthy human being and that the major causes of human illness and death continue to be not enough healthful food and too much unhealthful work. Eugenic and other gene dreams will not cure what ails us. Z
Ruth Hubbard is professor emerita of biology at Harvard University and author of The Politics of Women’s Biology and co-author of Exploding the Gene Myth. Stuart Newman is professor of cell biology and anatomy at New York Medical College. They are founding members of the Council for Responsible Genetics, Cambridge, MA (www.gene-watch.org).