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Eugenics
and Down's Syndrome
Philip
G. Ney, MD, MA, FRCP(C), FRANZCP, RPsych
Marie
A. Peeters, MD
May
2000
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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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Humans always must be able to face the crisis created by a helpless cry
and come away having matured and reasoned for rather than against
the desperate, poor and needy of society. If the human body
neglects an infected toe the gangrene can quickly spread and the
whole body die. History teaches us any civilization that
neglects its undeserving citizens will eventually collapse.
A priori, we have a sceptical attitude toward arguments that favour
eugenics and the selective destruction of Down's Syndrome children.
There is a reasonable alternative.
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
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