Timothy James Hruska
The door opens and your doctor steps into the room. The doctor is wearing a frown on his face. He tells you that they just got your tests back from the lab and wants to refer you to a genetic counselor. Given the current trend in our society man
y of us may fare this situation in our future. But what does this mean to our lives, what can these tests really tell us? In this document I will address what type of tests are considered genetic screening and what they can tell us, the ethical argument
s floating around in the media today, and how you should embrace this new technology.
What is Genetic screening
Many of the tests we call genetic screening are for pregnant women. Pregnant women are given many tests to screen for possible fetal developmental problems. Some of the tests done are blood tests to tell if the women has a higher predisposition t
o have a baby with spina bifida, or fetal Down syndrome. (Blatt 1997) These tests are safer than the invasive tests and many people are hoping that someday all of the genetic screening done will be done on the mothers blood, this te
chnique is called fetal cell sorting. But today many of the tests that can be done on the fetus require invasive techniques, like a needle for amniocentesis and precutaneous umbilical blood sampling where a needle is inserted into an umbilical vein in ue
tero. These tests can actually screen the genes of the fetuses. And in some situations women choose to terminate pregnancies because of the results.
One test done on newborns has been in practice since the sixties. Phenylketonuria is a disease that can cause retardation if not caught early enough in a child's development. The government has mandated the testing of newborn for this metabolic i
mbalance that can be treated by proper diet. (Blatt 1997) Many other diseases can be diagnosed at birth with relatively no danger to the infant as compared to the invasive procedure describe earlier. But many of these diseases that
can be diagnosed have no known treatment for them like Phenylketonuria. From newborns on up to adulthood many new diseases can be diagnosed.
Many tests have been developed, and more are developed everyday thanks to the Human Genome Project. The sheer enormity of data scientists are being presented with virtually ensure that almost everyone will have some genetic disorder that could be
identified. (Blatt 1997) Many of these "tests" are not so much definitive tests as screening for genetic tendencies. In many of these situations all that is identified is carrier status. This can be very useful in determining whet
her to go ahead and have children with your chosen partner. If you can find out that you are both carriers for a certain disease or disorder then other options may be explored, instead of going ahead and risking a baby with a possibly fatal disorder.
Genetic screening can also tell you about lifestyle risks. If it is found that a person has a tendency toward a disorder that is only a tendencies, other risk factors that contribute toward the actual disease may be lessened. But unfortunately th
ere are many people who find that they don't have a genetic disposition toward a certain disease will then ignore the risk factors and end up more at risk for a disease than if they had never been told their predisposition. (Economist 19
Knowing the distributions of disease in racial groups can be used to identify likely people who need testing. People of African ancestry are at higher risk for sickle-cell anemia. (Economist 1995) This disease can exist in a
carrier state which does not affect the individual, but if they have a child with another carrier, the child can be in great danger of getting the disease. Genetic screening could help to eliminate this possibility. Tay-Sachs can be found in Jewish per
sons of Eastern European ancestry. And Thalassemia can be found in people of Mediterranean and Southeast Asian descent. (Blatt 1997) Screening of these people and other people who are in high risk groups could stop many people of t
he next generation from ever having these diseases.
Ethical Questions raised by Genetic Screeing
The way these screening programs are used brings up many questions about the ethics of genetic screening. Picture a person who finds out that they are at risk for a serious and costly disease. They then go out and buy a large insurance policy. A
fter they are hospitalized for this illness, the insurance company pays all of their bill and maintains the person economically. This person paid normal premiums for insurance, but was paid back at a much higher level in paid off bills. Now suppose anot
her person is screened and finds that they are not in any danger of debilitating diseases for a great number of years. They don't buy any premiums. Now if a great number of people do what these two people did, then the insurance companies would bankrupt
, and there would be no insurance left for those of us who need it. But of course the obvious implication is why should the people who don't need the insurance pay for the people who can't afford their hospital bills. The people who make informed insura
nce decisions based on genetic screening are in a much better position than people who don't wish to know.
And apparently there is a very good reason for people to not want to know. Blatt (1997) brings up the point that labeling people as carriers of certain diseases can cause many other problems unrelated to the disease. Due to l
ack of knowledge and prejudice these people are suffering from "stereotyping, stigmatization, blame, genetic discrimination, and subsequent problems with low self-esteem." These people are being discriminated against, discrimination is accepted as being
morally wrong in our society, but it is not easy to get people to stop this discrimination. People who are suffering from the low self-esteem need to get counseling and find that it does not need to limit their lives, but just requires informed decisions
when it comes to reproduction. Counseling is also necessary for the people who find that they look forward to a serious illness.
In Time (1996), Nancy Wexler was quoted saying, when people are diagnosed they "end up hospitalized-not for the disease but for depression." This may not make sense to some people. We are taught from childhood that all humans
die. That we should Carpe Diem, seize the day. Finding out that your days are numbered should be treated like a liberating experience, no more wondering. Finally time to start living. But that is not the way many people look at the issue. Many peopl
e will need counseling to learn to deal with the knowledge of how they are likely to perish. This is the job of the new doctors. Doctors now need to be trained to deal with these situations. They have always had to tell people diagnoses. Now we can gi
ve a diagnosis much earlier. A whole new field is arising in the health care profession, that of the Genetic Counselors. They will be there to help people over the realization of their own mortality. There are benefits to knowing that many people would
want to have though to offset the emotional negatives.
The time left in your life could be used to bring together financial matters, and bring closure to many issues that so often end up unresolved due to lack of time after normal diagnoses. And there is nothing to say that a person will even live lon
g enough to experience many of the genetic diseases. Many people are born and live full lives never knowing that they carried a disease that could have ended their lives had they lived longer. Many people argue that we shouldn't even use these technolog
People argue that health care will no longer be available to everyone if insurance is done away with. And with the current trend, if the insurance companies are not allowed equal knowledge to the genetic results, then there is no hope of keeping i
nsurance companies solvent. (Economist 1995) Insurance companies would like access to the new results, that way people who will be higher liabilities will have higher premiums. But then many people will never be able to afford the
higher rates that would be needed. That is the result of actuarial fairness. The politics of our society point toward a universal health care system.
With a universal health care system those people who wish to benefit from the results of genetic testing can, and still have guaranteed health care. The problem with this approach though is that the people who will never need the health care syste
m will have to pay also. But even these people sometimes need health care. Everyone is subject to accidents, which is one of the main reasons for health care insurance. Another ethical question that comes from this topic is whether people should know t
heir children genes.
It is not a likely event, but Vermeulen (1997) brings forth the idea that people will use the techniques described earlier to determine attributes about their children before they are born, and possibly abort the pregnancies if
the results are not up to their satisfaction. Given that we have made abortion the choice of the mother, and that we will soon be able to determine things like predisposition's toward obesity, depression, or criminal behavior, is it right to abort these
children to weed these traits out? According to the ways the laws are set up right now there is nothing to stop these hypothetical parents from doing that very thing. This is a case of eugenics at the family level. But each individual step leading to
this action we view as morally acceptable. Even though over all most people would view this as wrong.
An opposing suggestion is that we could pick our children before they become fetuses. We could genetically engineer our children. It will soon be possible to pick each trait going into our child and make sure that no bad traits or tendencies are
going in. Religious people often portray this as playing God. Another way to avoid the abortions would be to try what Vermeulen (1997) says was tried in Korea. Fertilize the eggs outside of the body and analyze them for traits. Pi
cking only the best to bring into the world. It comes down to what people will see as the lesser of two evils. Should we abort fetuses for petty reasons, or play God and pick out our children.
A new perspective on the issue
When analyzing these moral arguments it is very helpful to look at them from a certain perspective. We owe it to our offspring to give them the best chance in this world for their survival as we their parents possible can. It is sadistic to not t
ake what steps we can easily take to greatly reduce chances of their having atrocious diseases. Genetic screening for carrier diseases is a good example of this. We can examine ourselves for diseases that will never affect us, but might affect our offsp
ring. Here there is some action that we can take. This is not like finding out you have a fatal disease with no treatment or cure. Would you purposely forbid your child from being screened for Pheylketonuria? Most people wouldn't. I wouldn't. Geneti
c screening for carrier diseases is something that we should feel just as obligated to provide for our children.
But what about diseases that we can do nothing to treat, should we know about these too?
Unless we are going to forbid all people from genetic screening we are going to have to rearrange our health insurance system. If we do not, there won't be a health insurance system around much longer to help those who don't want to partake in gen
etic screening, but need it. And everyone needs health insurance, if only for accidents. Being that it is very hard to stuff the cat back into the bag, we are going to have to redo our health care system. The best option would seem to be a universal he
alth care system. At least until something better is proposed. Some people will be paying more for less, but it is the only system proposed so far that has any chance of being passed politically. And finally the last issue of needless abortions.
I feel that it is wrong to have abortions unless there is some medical reason. My reason for this is that I respect human life. I wish children to have the same chance to make something of their lives that I do. But the only way we are going to
be able to prevent these unneeded abortions without prohibiting the freedom of choice, that has been decided as moral in this country, is to encourage genetic screening and planning. Either we can decide that it is moral to genetically engineer humans, a
t least so far as eliminating poor traits, or we can go over to in vitro fertilization and canalization like Korea tried.
From what I have been taught, God expects us to make the most of what we have. Any trait already in our gene pool is put their by God. So what difference is there if we let our genes segregate randomly or put a little control into the system? Pe
rsonally I would have the control. I do not favor the introduction of "new" traits into the genome, but I see nothing wrong in wanting my children to have the best out there. And with careful planning and research we should be able to maintain a safe va
riation in our population while giving the possibility of excellent genes to our children. And genetic screening of our genes will make this all possible.
Blatt, Robin JR. An Overview of Genetic Screening and Diagnostic Tests in Health Care. Obtained from the WWW. http://www.geneletter.org/0996/screening.htm (10/30/97)
Vermeulen, Robert. Should we allow parents to choose their children's
genes? Obtained from the WWW. http://srv3.inetbiz.com/objana/frog/choice.html
"Biotechnology and Genetics Survey" special insert. Economist. February 25, 1995. V 334, n 7903, p T13(3).
"Do You Want to Know If the News Is Bad?" Editorial insert. Time. Fall 1996. V 148, n 14, p 29(1).
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