The Eugenic Roots of Genetic Counseling
Charity requires us to believe that most contemporary genetic counselors are not at all motivated by considerations that we would term ‘eugenic.’ However, the founders of the field left no doubt about their motivations, stating them plainly and explicitly, and characterizing them as definitely constituting eugenics. The following material raises more than reasonable doubt that something may be amiss, even in modern day genetic counseling. Moreover, as one might expect given the ideological underpinnings of eugenics in the first place, evolutionary considerations are often a factor, implicitly, yes, but also explicitly.
Helen Keller: Physicians Juries for Defective Babies published in New Republic (1915)
Much of the discussion aroused by Dr. Haiselden when he permitted the Bollinger baby to die centers around a belief in the sacredness of life. If many of those that object to the physicians course would take the trouble to analyze their idea of “life,” I think they would find that it means just to breathe. Surely they must admit that such an existence is not worth while. It is the possibilities of happiness, intelligence and power that give life its sanctity, and they are absent in the case of a poor, misshapen, paralyzed, unthinking creature. I think there are many more clear cases of such hopeless death-in-life than the critics of Dr. Haiselden realize. The toleration of such anomalies tends to lessen the sacredness in which normal life is held.
It seems to me that the simplest, wisest thing to do would be to submit cases like that of the malformed idiot baby to a jury of expert physicians. An ordinary jury decides matters of life and death on the evidence of untrained and often prejudiced observers. Their own verdict is not based on a knowledge of criminology, and they are often swayed by obscure prejudices or the eloquence of a prosecutor. Even if the accused before them is guilty, there is often no way of knowing that he would commit new crimes, that he would not become a useful and productive member of society. A mental defective, on the other hand, is almost sure to be a potential criminal. The evidence before a jury of physicians considering the case of an idiot would be exact and scientific. Their findings would be free from the prejudice and inaccuracy of untrained observation. The would act only in cases of true idiocy, where there could be no hope of mental development.
It is true, the physicians’ court might be liable to abuse like other courts. The powerful of the earth might use it to decide cases to suit themselves. But if the evidence were presented openly and the decisions made public before the death of the child, there would be little danger of mistakes or abuses. Anyone interested in the case who did not believe the child ought to die might be permitted to provide for its care and maintenance. It would be humanly impossible to give absolute guarantees for every baby worth saving, but a similar condition prevails throughout our lives. Conservatives ask too much perfection of these new methods and institutions, although they know how far the old ones have fallen short of what they were expected to accomplish. We can only wait and hope for better results as the average of human intelligence, trustworthiness and justice arises. Meanwhile we must decide between a fine humanity like Dr. Haiselden’s and a cowardly sentimentalism.
Madison Grant, in his The Passing of the Great Race (1916):
Mistaken regard for what are believed to be divine laws and a sentimental belief in the sanctity of human life tend to prevent both the elimination of defective infants and the sterilization of such adults as are themselves of no value to the community. The laws of nature require the obliteration of the unfit and human life is valuable only when it is of use to the community or race.
H. J. Muller in the first annual address to the American Society of Human Geneticists (1949)
The avoidance of the penalty (pg 150-151)
Unless means could be found of lessening the natural mutation rate (a feat that would require the extended maintenance of the germ cells in vitro as a regular procedure), this rate represents a base line, an irreducible minimum, below which gene elimination cannot permanently be decreased. As shown above, attempts to do so can have only temporary success. We cannot eat our cake today and have it tomorrow. In later generations, a genetic selection must be resumed which is in its essentials as rigorous as that which was necessary for the maintenance of equilibrium under the most primitive conditions. [ie., natural selection. See previous section in Muller’s work, pg 144 ff, titled “The penalty for relaxing natural selection.]
But to pessimists protesting, “What price progress then?” it must be pointed out that there is after all one and just one way of avoiding the fiasco of a full fledged resumption of ordinary natural selection. That method, whether we like it or not, is purposive control over reproduction, exercised in such wise as to anticipate the need for natural selection of the usual, externally imposed type.
In order to fulfill the aim of achieving a form of selection more humane than that resulting from the unalloyed struggle for existence, it would of course be all-important for this purposive control to be carried out, not by means of decrees and orders from authorities, but through the freely exercised volition of the individuals concerned, guided by their recognition of the situation and motivated by their own desire to contribute to the human benefit in the ways most effective for them. This is the only real solution, the only procedure consistent with human happiness, dignity, and security. For to be slaves coerced by others is even more obnoxious than to be exposed to the full rigors of nature. But for the voluntary adoption by people in general of a course of such wisdom, and so different from that now followed, a deep-seated change in mores would be necessary. Not least among the requirements for this would be a far more thoroughgoing and widespread education of the public in biological and social essentials (see p. 163). And there would also have to be very great improvement in the technical methods whereby the more important features of the genetic constitution may be judged.
Granted that such voluntary reproductive control can eventually become effective enough to result in the elimination of as many mutant genes as concurrently arise through mutation, the ameliorative practices of medicine and of civilization generally are divested of all their harm to later generations.
Motivations and criteria for genetically acceptable practices [pg 162-163]
Despite our insistence in the foregoing that indefinitely prolonged continuance of the present patter of reproductive behavior along with a continuance of modern medical practices and of the now prevailing attitude toward radiation, would eventually lead to grave genetic consequences if not to complete disaster for mankind [there is time to address the situation.]
[…] Only after opposition [of people more interested in the immediate than the future of mankind and in ‘powerful groups, whose interests lie in the preservation of antiquated ideologies in general’] of these last, more especially, has become sufficiently weakened to allow the conception of evolution, including that of its genetic mechanism, to become as much a cornerstone of elementary education as the rotundity of the earth, and after the processes and consequences of genetic change throughout the ages have been visualized and dramatized for people in general from their early years on through their later development, can we expect the arguments, calculations and recommendations of geneticists to take on sufficiently concrete meaning for the average man, the medical man, and the man in public life, so as to influence them adequately in their conduct of practical matters. To work for this modernization of educational policy and methods, with a view to reshaping the average man’s view of his place in nature, is therefore one of the first duties of those who appreciate the significance of genetics in human affairs.
Lee R. Dice in “Heredity Clinics: Their Value for Public Service and for Research (Article by president of American Society of Human Geneticists in March, 1952).
The danger of deterioration of the world’s stock of human genes through the accumulation of harmful mutations was forcefully pointed out at the 1949 annual meeting of the American Society of Human Genetics by our president for that year, H.J. Muller (1950). The harmful mutations that occur in primitive human populations may be assumed usually to be eliminated in time by natural selection. In our modern societies, however, many individuals who carry serious hereditary defects survive to transmit their harmful genes to their offspring. Even persons who carry such unfortunate traits as diabetes, pernicious anemia, or retinoblastoma can often be kept alive by medical treatment. The mutations that are responsible for these and numerous other serious diseases consequently have a tendency to accumlate and to reach a higher level of frequency in modern than in primitive populations.
One method of preventing the transmission of a harmful hereditary trait is to destroy those individuals who exhibit the trait. This drastic method was in fact employed by the rulers of Nazi Germany, but it is utterly repugnant to most persons.
Only two practical ways seem to be available for eliminating harmful genes from a modern human population. Either those persons who carry hereditary defects may be segregated or sterilized by the state, or they may voluntarily refrain from reproduction.
[… not all sterilization is bad, but…] Any program of sterilization sufficiently extensive to eliminate any large proportion of harmful genes from a human population would interfere seriously with the liberties of the people. No sane geneticist would be willing to assume the responsibility for deciding just which ones of his friends and neighbors should be sterilized.
In a democracy, such as ours, any program for the improvement of human heredity must be based on the voluntary cooperation of the citizens. Compulsion should play no part in such a program, except only in the most extreme cases of irresponsibility. […] Voluntary abstention from reproduction by those persons who carry hereditary defects is consequently the only practical method for eliminating any considerable number of harmful genes from the population of a democracy.
[… most parents would not bring a defective child into the world if they knew better…]
The cooperation of the people in a program for the voluntary limitation of the reproduction of inherited defects, therefore, can certainly be obtained. The success of any such program, however, is dependent upon each family being given dependable advice. The education of the people in the general principles of heredity will help them use advice wisely, but no amount of education will enable most people to discover which of their traits are inherited and which not, nor enable them to estimate the likelihood that a child will inherit a particular trait. [This is difficult even for “a person who has had considerable training in human genetics.”]
For advice on human heredity most persons naturally turn to their physicians. […but even these are ill-equipped for these challenges, so….]
A heredity clinic is, in my opinion, one of the best devices to give help to physicians and others in problems which concern human heredity.
Harrison Brown in The Challenge of Man’s Future (1954)
Persons born with a wide range of defects which formerly meant certain death can now be saved. And to the extent to which these and other defects, or susceptibility to defects, result from specific gene combinations, they will be transmitted to posterity.
The primary consequence of our removal of the forces of natural selection which have operated for so many generations will be that civilized man will become increasingly dependent on an artificial environment for his survival. As time goes on, he will become less and less able to recover from any major perturbation in civilization which might prevent the smooth functioning of his elaborate network of medical facilities. It is not at all unlikely that in future generations the majority of children born will have to be repaired in one way or another another, and ever greater numbers will have to adjust their biochemical functioning throughout their lives with diverse pills and injections.
Is there anything that can be done to prevent the long-range degeneration of human stock? Unfortunately, at the present time there is little, other than to prevent breeding in persons who present glaring deficiencies clearly dangerous to society and which are known to be of a hereditary nature. Thus we could sterilize or in other ways discourage the mating of the feeble-minded. We could go further and systematically attempt to prune from society, by prohibiting them from breeding, persons suffering from serious inheritable forms of physical defects, such as congenital deafness, dumbness, blindness, or absence of limbs. But all these steps would be negligible when compared with the ruthless pruning of man that was done by nature prior to the rise of civilization.
Unfortunately man’s knowledge of human genetics is too meager at the present time to permit him to be a really successful pruner. The science of human genetics is not very old, and reliable facts and figures which enable one to differentiate satisfactorily between genetic effects and environmental effects are few and far between. Nevertheless, there is at present sufficient information to permit man to make a start toward pruning, however small it may be. And it is quite possible that by the time another ten or fifteen generations have passed, understanding of human genetics will be sufficient to permit man to do a respectable job of slowing down the deterioration of the species.
This can be accomplished in two ways. First, man can discourage unfit persons from breeding. Second, he can encourage breeding by those persons who are judged fit on the basis of physical and mental testing and examinations of the records of their ancestors.
Although man may eventually succeed in halting the deterioration of the species, it is doubtful that he will be able successfully to improve upon the species by selective breeding for specific qualities. We know to some extent what we don’t want in the human machine and can eliminated those particular features. But when it comes to our carrying out a planned evolution during the course of a few thousand years, we are far more seriously handicapped. We can carry out selection processes satisfactorily with sheep, cows, horses, and dogs, for in all cases we are able to examine the animals objectively and decide upon desirable qualities. But when we examine ourselves we are unable to do so objectively. We cannot hope to carry out a planned evolution of our species for the simple reason that we haven’t the slighted idea of what we want, and no mechanism is available that will permit us to determine what we want. A “super-race” of men or a panel of gods could examine us objectively and plan a wise pattern. But in the absence of either, we will probably remain pretty much as we are for hundreds of thousands of years.
Frederick Osborn in The Future of Human Heredity: An Introduction to Eugenics in Modern Society (1968), pages 89-92:
Proposals for the Reduction of Defects
In the not too distant past most people thought of a hereditary “taint” as an act of God, something beyond man’s control, even perhaps as a punishment for past sins. God visited the sins of the father upon his children even to the third and fourth generation. Today we know that mutations and their haphazard results are part of the law under which God moves to creation and evolutionary advance. [But people still are ashamed of their ‘defects’ and even try to hide it.]
A change in attitudes is an essential step toward the development of policies for reducing defects and abnormalities that have a genetic origin.
Fortunately the climate for such a change is rapidly improving with the advance of knowledge in the field of what is now called “medical genetics.” Immediately after World War II the medical schools in the United States greatly increased their interest in heredity and began research and teaching in the genetics of defects, abnormalities, and susceptibility to disease. By 1964 the World Health Organization in its Report on Human Genetics and Public Health, stated that “problems of defect and abnormality are considered the responsibility of medical and public health services.” Advances have been made in the detection of carriers and in methods of treatment. Most important from the point of view of eugenics, some twenty-six or more medical schools in the United States are now operating heredity clinics, where couples can go for information about the probability, or risk, of their having a defective child.
Heredity clinics are the first eugenic proposals that have been adopted in a practical form and accepted by the public. They are run by scientists and their findings are based on scientific knowledge. The word eugenics is not associated with them. The couples who go to them for advice are interested in not having an abnormal child, rather than in the less personal goal of improving the race. If they suspect that they may be carriers of a particular deleterious gene or group of genes, they want to know whether their children will suffer the defect. It is the function of the heredity clinic, after careful examination of the family record, to advise on the chances of the defect being passed on to the children. Reports from these clinics indicate that couples are considerably influenced by the information they receive in the clinics, and generally, but not always, they are influenced in a eugenic direction. Heredity clinics will become more important with every advance in knowledge of human genetics and with every increase in the education of the public.
Alternative means for reducing the incidence of defect will be proposed from time to time by scientists, and the public will have to decide which means are acceptable. They will probably decide on the more moderate proposals. There are many considerations to be taken into account other than the strictly genetic. Perhaps the most important function of the public is to create a climate of opinion that will put pressure on carriers of defect to reduce their reproduction, and on scientists in medicine and public health to put priority on all studies that might provide leads for effective action.
A better understanding of heredity, frank recognition of the personal and social problems arising at every level, open discussion, and a sense of each individual’s obligation to his children and to the community of man–all these are essential to success in reducing the heavy load of hereditary defect.
Elaine Freeman, The ‘God’ Committee, published May 21, 1972, in the New York Times
For many doctors and parents, the tough ethical problems would be solved if the infant’s handicaps could only be determined before birth. To them, the abortion issue is far less troubling than the question of withholding treatment.
With the technique of amniocentesis, genetic scientists have achieved a high degree of accuracy in predicting mongoloid births. By inserting a needle in the womb, they withdraw some of the mother’s amniotic fluid; the fetal cells floating in the fluid are then grown in the laboratory and their chromosomes inspected for the telltale extra mongolism chromosomes. (As yet the method is not feasible in the early stages of pregnancy when abortion is simpler and safer, however).
Refined techniques of intrauterine diagnosis could one day also allow detection and abortion of the fetus with meningomyelocele. Theoretically, a number of detection mechanisms are possible.