Many things are changing at an extremely rapid rate in our society. The new advances in the areas of science and biotechnology are raising many ethical and moral dilemmas for everyone. No one will be left unaffected. Everyone will have to make a decision and take a stand on these issues. I will discuss advancements of genetic screening and testing. The first step to any ethical problem is to understand the topic. It is difficult to formulate accurate ideas without knowledge about the topic, so first I will provide a little background information on genetic screening. I will then point out some of the areas of controversy associated with genetic screening, and finally I will discuss my view on the topic.
Genetic screening can be used to refer to any activity that locates or advises people about genetically connected diseases. The first large-scale genetic screening project began in the 1960's with the Guthrie test which tests infants for PKU (phenylketonuria) (Munson, 1996). Currently with the advances being made by the Human Genome project we are achieving a much more detailed understanding of the relationship between specific genes and diseases. Approximately nine hundred gene or gene markers have been linked to diseases (Munson, 1996). With all of the new information about our genes, the ability to develop tests to screen for these genes is becoming possible for a much larger number of diseases. Some of the current DNA tests available diagnose Adult polycystic kidney disease, Alpha-1-Antitrypsin deficiency, familial adenomatous polyposis, hemophilia, Huntington's disease, myotonic dystrophy, and familial breast cancer susceptibility (Munson, 1996). Many more tests are well on the way to being developed. With the possibility of testing for numerous diseases we are going to be able to gain an increasingly vast amount of knowledge about ourselves. In some ways genetic screening will become similar to a fortuneteller - a scientific fortuneteller. This new information will have some obvious benefits. We will now be able to predict if we will be susceptible to a certain disease and consequently take more preventative measures against that disease. Treatment for some genetic diseases may also become available and we will be able to treat that disease. With our new technology, we may be able to treat problems in utero before a child is even born. This new information may seem like a great benefit up front, but there are many areas of ethical and moral concern that need to be addressed. What kind of decisions is this new information going to call on us to make? Who will have access to this information?
One of the main concerns to genetic screening is that it will lead to new forms of discrimination. This new discrimination could arise in a number of areas. One area that worries many groups is discrimination in the workplace based on genetic predisposition. Could or would employers use genetic information when hiring employees? Munson points out a specific case when this may happen. Ten percent of the population has a variant form of a gene, which produces AHH (amyl hydrocarbon hydroxylase) an enzyme that breaks down hydrocarbons in pollutants. The variant form of the gene produces the enzyme in excessive amounts that react with hydrocarbons and produce carcinogenic substances. These people would be twenty-six times more likely to get lung cancer from being exposed to hydrocarbons (Munson, 1996). This information could be beneficial by allowing employers to protect the health of their employees. It would also save the employers money by lessening the number of damage suits and allowing for lower insurance premiums. In fact in 1982, 59% of large companies either already had or planned on beginning genetic screening programs. This idea, however, did not catch on with many civil rights, women's organizations, and labor unions. These groups feared employers would use this information to discriminate against an entire group if a member of the group was more prone to be susceptible. Employers dropped most plans to screen workers in 1986 (Munson, 1996). Another area where discrimination due to genetic predisposition is feared is health insurance. Will insurance companies eventually be allowed to require screenings? They could use this information to charge much higher premiums to certain individuals, making insurance unaffordable to some. If mandatory screening isn't allowed they could also raise all prices and then offer lower prices to those who agreed to genetic screening. This would allow them to forego mandatory screening, while still achieving the same results.
A third major area of concern is social discrimination. Could this information create a new subgroup of people-those with less desirable genetics-to discriminate against. It was not very long ago when Nazi Germany discriminated against the mentally ill and handicapped. Many of these people were treated less than human or killed because they were considered less than human (Coutts). Could this new information about our genetics cause a similar sort of discrimination, even if not to that extreme? Test can now determine genetic problems before a child is born. We are able to test for genetic problems in the developing fetus or embryo. This knowledge will cause many tough decisions for the parents of that child. Of course the information could be very beneficial by allowing for treatment to the fetus to prevent or lessen the problem. The information could however lead to an increase in the number of selective abortions. Blumburg states that selective abortion occurs "when the pregnancy is planned but the fetus is perceived as having undesirable characteristics (Blumburg)." This idea of increased selective abortion is very likely. The number of babies born with Down syndrome has been declining rapidly, now that amniocentesis is common. Many more mothers are opting for abortion rather than bringing a "less than perfect" baby into the world.
A third major area of concern is who should be tested, and who should have access to this information. A case study by Fletcher and Wetz discusses Mrs. S who discovers that she has Huntington's disease, which is of genetic origin. It usually shows itself between the ages of 30 and 60, and causes mental deterioration. The disease causes intense suffering to both the individual and the family. The disease is inherited in a dominant Mendelian pattern (Fletcher). Each child of an affect parent has 50% chance of developing the disease (Munson, 1996). Until recently it was not detectable until the person showed signs later in life, well into her childbearing years. In the case of Mrs. S she had children, nieces, and nephews that are, or soon will be in childbearing years themselves. She is the only one in her family that has lived long enough to discover the disease. Mrs. S refuses to tell her family. Thus none of her children will be able to plan according. Does she have the right to confidentially? Does her family have the right to be informed of their chances of developing the disease?
This case study brings up an important point. Should a child be informed of his/her genetic predisposition? The discovery of the breast cancer gene has made it possible to identify those who are more susceptible to the disease. These individuals have an 85% chance of developing the disease (Munson, 1996). Should women who have been tested inform their daughters of this risk? Genetic diseases such as Alzheimer's Dementia and Huntington's disease are diseases that show themselves later in an individuals life. Should a young person be informed that they would probably develop these diseases in the future? What kind of effect will that have on an individual's life? Some people believe this will allow that individual to take better advantage of their life. But not all people may act in this manner. Some people may live their lives being depressed knowing they will develop a disease that does not have a cure.
As you can see the controversies over genetic screening cover a wide range of areas. All of us will be affected in some way or another. That is why it is important for individuals to be informed and have a strong feeling for where they stand on an issue. I have developed a good understanding of many of the problems involved by my research and participation in a biomedical ethics class. Genetic screening has, however, become much more real to me in the past month.
I recently discovered that genetic screening would enter my life sooner than I would have ever anticipated. I found out in an article by Stephen Goodie, that since 1992 all members of the U.S. military are required to have DNA tests. Two marines refused the order and were court martialed (Goode, 1996). Since I will be commissioned as an officer in the United States Army in less than nine months, I will no doubt be required to have the DNA testing done. According to the military the data they gain will be used to identify the remains of soldiers. It will be kept for 75 years and then destroyed.
I believe that genetic screening will be very beneficial in certain aspects. It would be good to identify diseases such as PKU that can be treated. I do not think, however, that all diseases need to be tested for. If there is no treatment available I don't think there is any benefit to test for that particular disease. The affects of this knowledge on an individual will be too great. I don't think mandatory screening by large companies is a wise idea either. The data would no doubt be kept on computers, which are not all that secure. The main worry of companies is of their own economic interest and not the concern of the employee. The testing could be voluntary to achieve safety of the workers. It is hard to imagine that our society would be so discriminatory, as to devise a new group to discriminate against, but I think that the likelihood is there. We may not revert to Hitler and kill all those living individuals we find to be "less than perfect", but we may achieve the same results by the selective abortion of the unborn who are "less than perfect". I do not believe we have the right to judge the worth of the life of an unborn child with or without defects. Our society on a whole is moving more toward playing God than I believe is good. We have to be careful in how we treat the new technologies. Yes, there are many benefits, but I don't think we should plunge headfirst into the water. We must carefully look at the benefits and at the problems that may also result. Many times it seems we don't worry about the consequences until it is too late. I believe genetic screening will be a great benefit in our future if it used only for the right reasons, but will we be able to control the new information?
Coutts, Mary Cottington, and Pat Milmoe McCarrick. "Eugenics." Obtained from the www: http://guweb.georgetown.edu/nrcbl/scopenotes/sn28.htm
Fletcher, John C., and Dorothy C. Wertz. "The Price of Silence."
Goode, Stephen. "Marines Stand Ground Against DNA Testing." Insight. P. 38. February 19, 1996.
Munson, Ronald. Intervention and Reflection-Basic Issues in Medical Ethics. 5th Ed., Wadsworth Publishing Co., 1996.