| Introduction
As society in general and medicine in particular lose the direction once provided by ancient morality in determining medical ethics, the void is being filled with a variety of arguments all of which, upon careful examination, are mostly sophistry in the interest of self. We must always be careful to avoid rationalizing thoughts that are basically hedonistic. Much of what passes for ethics are arguments of the haves against the have-nots. |
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Arguments for and Against Eugenics for Down’s Syndrome
1. Poor quality of life. It is frequently argued that because these children are not fully capable of knowing and understanding they cannot possibly have a high quality of life. Because they have a poor quality of life, it is argued they should not have any life at all. The facts are that Down’s Syndrome children do enjoy life. They smile frequently and bring joy to others. There are fewer suicides among handicapped people then there are among those without handicaps.
2. Burden to the State. It is argued that the money that is spent on the continuing care for people with Down’s Syndrome could be better spent on research and the provision of care for the rest of us. This usually meaning middle-aged people who want expensive medical treatment such as heart transplants. It is argued that Down’s Syndrome children also interfere with their parents’ pursuit of pleasure and fulfilment. The facts are that Down’s Syndrome children have a lower per capita cost than most chronic disabilities. If a family is provided with occasional relief and a small maintenance most families are quite content to have the Down’s Syndrome child live with them for they realize their special contribution. People with Down’s Syndrome can also be taught to do piece work. Although not able to earn at standard union wages, they can work in well organized work shops and make enough money for their own keep. As will be pointed out, with modern educational, psychological and biochemical treatment, they can have near normal intelligence.
3. Cannot contribute to society. It is argued that people with Down’s Syndrome cannot make a meaningful contribution to society. This generally means not having a well paying job which allows them to become good consuming citizens and thus support a materialistic society. In fact, they make a whole variety of contributions of a non-material nature that will be discussed later.
4. Improve the gene pool. It is argued that eugenics is necessary to improve the gene pool. Careful statistic analysis show that the selective diagnosis and destructive of Down’s Syndrome children does not improve the gene pool. It may, in fact, worsen it. At the age of forty, a woman only has a one percent chance of having a Down’s Syndrome child. The insistence that she has amniocentesis raises considerable stress. That stress can increase her level of estrogens and feminize both male and female offspring. There are many clinical examples of women who, with an uncertain diagnosis of Down’s Syndrome, have aborted a totally healthy child and spent much of their lives in self recrimination.
5. The Value of Down’s Syndrome children. We hesitate to put forward the following arguments because we strongly believe every child has a right to exist and to be welcomed. However, Down’s Syndrome children enrich society in many ways.
A. Utilitarian arguments
i. They teach us to be patient and loving. To stop and wait while they finish an activity give us an opportunity to observe small things more closely. They teach us gratitude for all the gifts that we are given. Because of their dependency, they teach us to be loving and caring. Without the dependency of needy people, our world would become careless and loveless.
ii. People with Down Syndrome have a different view of life. They seem to be able to detect the essential elements of life, and by their frankness and lack of social niceties they can cut through many formalities, disarm us from our prejudice and get to the heart of relationships. Jean Vanier, taking a person with Down’s Syndrome to a wide beach in France, asked him to draw a picture of joy in the sand. This person responded, “the beach is not big enough.”
iii. People with Down’s Syndrome and other relatively helpless people force us to deal with our own helplessness. Sooner or later we must recognize that we all have handicaps and that we are all dying. The sooner we learn to deal with our helplessness, the better able we are to maximize our opportunities and utilize all our God given abilities and opportunities. Down’s Syndrome children create a helpless cry like a kitten mewing on the rain soaked streets of a large city in the dead of night. We must deal with a crisis we would rather avoid. If we respond with nurture we grow. If we respond with aggression or neglect we begin to die, as does the kitten. A person with Down’s Syndrome’s inability to deal with many of the complexities of life forces us to decide to grow with them by nurturing their needs. If not, we die inside not able to hear their cry and respond to it, and thus not able to hear the cry of our own helplessness.
B. Moral Arguments. Down’s Syndrome children force us to question many of our cherished moral tenets such as the equality of all humankind. They force us to reevaluate, rethink and restate assumptions that must guide us in critical situations. People with Down’s Syndrome force us to question the ethic of wantedness.
C. Spiritual Arguments. People with Down’s Syndrome point us to God. They help us to see ourselves as we really are. They help us to know God’s mercy and love, for if God loves the weakest and poorest among us as much as he does us, then surely he will love us in our weakness and poverty. We need never be ashamed or afraid of it.
Progress in the Medical Management of Down’s Syndrome
Dr. Marie Peeters discovered that Down’s Syndrome patients being treated for Leukemia were very sensitive to methotrexate. This pointed to abnormalities in a variety of metabolic pathways. Since the children were not able to utilize or manufacture their own ingredients for normal brain metabolism, it has been found that to provide high doses of coenzymes or to bypass the defective pathways by adding an abundance of n-products can greatly improve the appearance and function of Down’s Syndrome children. If folic acid is given from birth (+/-.5 milligrams per kilogram per day) it has been found that Down’s Syndrome children are more active, concentrate better, have fewer infections, have fewer thyroid problems and have improved morphology, i.e.. do not have protruding tongues. Folic acid, with or without vitamin B 12, plus infant stimulation (e.g.. speech therapy) make it possible for many Down’s Syndrome children to learn how to read and write and go to a normal school, at least until the age of seven.
Problems
The eugenic ethic is really a response to some deep underlying problems that humans have always had difficulty grappling with. These are;
1. Denial. They would like to forget or ignore the fact that everyone is ignorant (lacking knowledge and insight), disabled (many mathematicians cannot carry a tune), dying (it is only a matter of time before aging overcomes regeneration) and mentally ill (we all do self-destructive things for subconscious reasons.
2. The dichotomous division of continuous reality. The digital computer has helped us ignore the fact that almost every aspect of reality is continuous, e.g.. weight, distance and radiation. We would like to convince ourselves that we are not one of those (e.g.. dying), because we don’t belong to the group in which we have placed them. We are not one of those (e.g.. disabled), because they exist in a class we have created for them.
3. There are supposedly limited resources. The life boat mentality is maintained for those arguing that Down’s Syndrome use up precious resources and that their existence will mean that either the whole boat sinks or somebody else has to be thrown out.
4. It has been widely taught and frequently believe that the first right of every child is to be wanted. This sentence is a death sentence for millions of handicapped and normal preborn people. To be alive because you are wanted is to be sentenced to a life of existential anxiety, survivor guilt, anxious attachments, ontological guilt, self doubt, distrust and the inhibition of expression to maintain pseudo-secrets. We do all of this in an effort to provide ourselves with a sense of security and immortality. The net effect is that it alienates and destroys many people upon whom we depend.
The Solution
We must face these false securities and deal with the underlying dilemmas. We must drop the denial for we are always one of them, whatever category they may be assigned to. We must measure things on an analog scale, recognizing we are different only in some degree. We must recognize that their is no limit to resources. The universe is boundless and, as far as we know, expanding with room and resources for all, were we courageous enough to colonize the stars. We must recognize that everyone must be welcomed. Because they are welcomed they are worthy and not vice-versa. When they are worthy they have a self-worth that they pass onto others and to the world. Thus they look after each other and the world in which we live.
Basic Tenets
1. We believe that Truth is unitary. There cannot be a division between science and ethics, otherwise there will be continuing conflict and no guidance provided for those who must make decisions daily about the existence of other people.
2. We must learn from history, because if we do not we will repeat it. We must recognize that as we treat the most limiting infected part of the body for the benefit of the body, so we must care for those who are designated as the lowest and the poorest because they are part of us.
3. We are all part of the bundle of life. What happens to others happens to us because we are intrinsically united.
4. The Universal Ethic of Mutual Benefit reminds us that we cannot benefit at the expense of our neighbour. If it is not good for him it is certainly not good for us. If it is not good for a woman it is not good for a man. If it is not good for the unborn baby it is not good for the mother. Science basically supports this proposition