A variety of technological advances over the past 3-4 decades make it possible to acquire a great deal of genetic information on any given individual. These technological advances enable one to track the inheritance of a disease-causing gene within a family and to detect disease-causing genes prenatally. While some of the tests provide information only on the risk of developing a disease, others can predict with high confidence that a person will develop a particular disease. The severity of the disease can sometimes be predicted, even before the appearance of clinical signs. Recent advances in technology (the polymerase chain reaction, in particular) make it possible to characterize the genotype of single cells, or rare mutant cells in a population of normal cells.
There are many advantages of the above technology for disease diagnosis and for monitoring the effectiveness of therapy. However, a variety of ethical problems arise from knowledge gained by the power of this technology. Issues such as the right to privacy and ethical questions about the personhood of the unborn come into play. We will look at some of the ethical issues that arise from this technology and will examine how different worldviews shape our approach to those issues. In particular, I will contrast the Naturalist worldview with the Christian worldview . We will then look at some of the logical consequences for adopting either worldview.
For this discussion, late onset diseases are defined as those that arise in adult life and have a genetic basis. An example of a late onset disease is Huntington’s disease. This disease is a neuro-degenerative disease that generally begins showing symptoms at mid life (30-40 years old). The disease is progressive with patients loosing motor control, developing dementia, and ultimately succumbing to death. Huntington’s disease is caused by a dominant-acting mutation in a single gene. Individuals that inherit the disease-causing gene have essentially a 100% probability of developing the disease if they live to mid age. The disease is very emotionally draining for family members as they watch their loved ones succumb to a very unpleasant death. There is presently no cure for Huntington’s disease and no effective treatments.
With all of the emotional and financial drains associated with Huntington’s disease, should this disease be screened for prenatally? Most people would argue against prenatal screening. Huntington’s disease patients live to mid age with normal lifestyles. In some parts of the world an age span of 40 years is average life expectancy. There is no obvious reason why individuals who inherit the Huntington’s disease gene should be eliminated from the population. It is quite possible that in 40 years, a cure for the disease may be developed. There are also subtle psychological issues. Suppose a husband has Huntington’s disease and his pregnant wife prenatally determines that her unborn child has inherited the disease-causing gene. If she aborts, it could be interpreted by her husband as a statement that his existence is so miserable, he should not have been born.
When is the appropriate time to screen for the gene? Should a 10-year-old child be screened then told that he or she has inherited a disease-causing gene that will lead to a painful death? Most agree that testing should not be performed until the patient is at least 18 years old. But then other problems arise. Who has the right to the information? Parents, spouse, children, other relatives? Can employers or government agencies acquire this information? Should insurance companies be allowed to use genetic tests for determining coverage? How should the information be used for family planning prior to potential pregnancies? Many people faced with the prospect of potentially having inherited a disease-causing gene would simply rather not know. Either decision, to screen or not, can lead to life changing behaviors with plans for marriage and childbearing.
It is now possible to identify many traits of individuals prenatally. The list of traits, or conditions will only grow in the future. I know of a situation in which a genetic test was done for a family to determine whether the child the mother was bearing would be albino. The mother shared that if her unborn child was albino she would abort. Her reasoning, when questioned, was that she was albino and found her life so difficult that she did not want her child to be albino. She saw her decision as a way of assuring the quality of life for her child. The student doing the work saw it in a different light. Because of his faith, he felt he could not longer participate in the research project and he resigned his position.
If one claims that the above situation is not appropriate grounds for abortion, do more severe situations justify abortion? Is Cystic Fibrosis, Muscular Dystrophy, or Mental Retardation considered severe? If yes for these, where do you draw the line? What is a severe disease? What "conditions" are considered severe enough?
Secondly, should this technology be applied to genotyping embryos generated by in vitro fertilization? Single cell technology enables one to remove a single cell from an embryo and then analyze the genotype of that cell. Embryos with the appropriate genotype can then be implanted into the mother. Should this approach be used for disease screens? What diseases or traits should be screened? What happens to the left over embryos? Should this technology be used to screen embryos for certain HLA types so that an unborn child can be used as an organ donor for another child in need of an organ transplant?
Central to this discussion is the issue of what defines human life and what is the purpose of life. These issues meet head on with the issue of abortion. In America there have been over 35 million abortions since 1973 averaging about 1.6 million per year (the number dropped to about 1 million per year recently). This amounts to 335 abortions per 1000 live births meaning that about a quarter of the last generation was aborted. In many parts of the world, including Washington DC, there are more abortions than live births.
Your worldview, or belief system, dictates how one approaches the above issues. In America, there are two dominant worldviews at work. These are the Naturalistic worldview, and the Judeo-Christian worldview. Each view has a different perspective on mankind, our place in the universe and the meaning of life. Below, some major points of each worldview are contrasted.
A. Nothing exists outside of matter. All life appeared solely by random evolution.
B. There is no distinction between humans and other animals. Man is part of nature and has no special status.
C. Moral truth is relative. There is no external source of morality. There is no absolute right or wrong because it is our own decision. Therefore, anything good for me is good.
D. My goal is to satisfy my own needs. I am in control of my life.
There is no underlying purpose in life.
A. More exists than just matter. Life was created by God.
B. Man is a special creation. God created him in His image. Man is distinct from other animals and has special dignity and status.
C. There is absolute moral truth (revealed in the Bible). God is the source of moral truth and Man has gone astray.
D. My goal is to glorify God by living under his benevolent control.
E. Man was created for the purpose of fellowship and relationship with God.
With the naturalistic worldview, all moral truth is relative and there is really no underlying purpose for life. Therefore, I can abort a child with a genetic disease because moral decisions are all relative. While in principle, this is a logical outworking of the worldview, there is an internal conflict within the system. The naturalistic worldview asserts that all life, including humans, arose from natural processes such as evolution. Abortion removes the substrate for evolution. The gene pool is reduced. This alters the driving forces of evolution. You may argue that you are only removing "harmful" mutations. But how do you know? Manic-depressive behavior in some cases gives rise to artistic genius. Will we eliminate Hemingways and Van Goughs? How does one know that the diseased individual is not carrying an additional mutation that is the driving mutation for the next stage of human evolution? To argue for abortion means that you are claiming to be smarter than the process that created you. Therefore, abortion is dangerous to the naturalistic forces of evolution.
With the Judeo-Christian worldview, the unborn is believed to be a special creation by God. This individual is created in His image and has inherent worth and dignity. Worth is not based upon genetic qualities, but on the statements and actions of God. To abort would be to destroy something that God claims has worth. You would be in conflict with the word of God, claiming to be smarter than His wisdom. Thus, abortion is dangerous in the Judeo-Christian view.
What about a civil law perspective? In the United States, we claim that we all have the right to life, liberty, and the pursuit of happiness. This "right to life" is narrowly defined. It is only extended to human life. Therefore, we need to answer three questions.
1. Is the unborn human? Modern science tells us yes. The cells are not dog, cat, or any other species. The cells are human cells.
2. Is the unborn part of mother or a distinct individual? Again, science demonstrates that the unborn is a distinct individual with a distinct genetic make up. The genetic make up is unique, neither mother nor father.
3. Is the unborn really a person? This question is somewhat difficult to answer with certainty. Modern medicine is continually pushing back the time of delivery of premature babies. When is it a real person? We don't really know. Any decision we make is arbitrary. Scripture argues that personhood occurs very early (Jer. 1:5; Isa. 49:1; Ps. 139; Luke 1:41-44).
Answers to the above 3 questions indicate that the unborn is a distinct human, and potentially is a person at conception. A later time period for personhood is possible, but uncertain. Abortion is dangerous from a civil law perspective because you could be killing a person. Therefore, to avoid potentially killing a person, the safest position is at conception.
From each position, naturalist, Judeo-Christian, or civil law, abortion has problems and there are many arguments against it. What are the arguments for it? The strongest argument is to reduce suffering. Let's look at suffering from a Naturalist and a Judeo-Christian view.
From a naturalistic worldview, there is no real right or wrong and no real purpose in life. All things are relative to me. My goals are to maximize what is good for me and to reduce my own suffering. If I have a child with a genetic defect, I will suffer, and the child will suffer. Therefore, I should abort. Reducing suffering is my main priority. How can reducing suffering be wrong or bad?
From a Judeo-Christian perspective, suffering is not the great scandal that the naturalistic worldview makes it out to be. In fact, suffering has a purpose. The Bible tells us that we are perfected in our suffering. This is a hard and rather unpopular teaching for present day American culture. To understand it better, we have to more clearly define suffering. Suffering can be grouped into two broad categories, planned and unplanned. We have little trouble with planned suffering. This is the sort of suffering that is needed to accomplish a goal. This suffering is considered worthwhile because of the reward on the other side. Examples could be going to medical school, training for a sport, or painting a house. However, we have serious problems with unplanned suffering. This suffering comes without our choice and is harder to deal with. Yet, when emerging through this suffering, we are often times strengthened and enriched. Marriages that withstand time and suffering result in deeper love and commitment, for example.
But what about a diseased child? Can't I avoid that suffering? In fact you can. But according to the Judeo-Christian perspective, you lose something.
1. In reality, you can't escape suffering. It is part of human life. You may escape the suffering associated with caring for a diseased child, but you suffer other emotional consequences. There are emotional consequences of abortion and you will now suffer from those emotional issues.
2. You hurt yourself trying to avoid suffering. Because you can't really escape from suffering (it will find you), you live in fear. Once you have stood through suffering, you are no longer afraid. The suffering may be painful, but it no longer grips you with fear. To run from suffering is like building your house on the sand. Jesus said, when the storm came, the house on the rock stood firm. It is not an question of whether the storm will come, it will. It is a question of how we respond to the storm.
3. You loose perspective of your purpose in life. Your purpose is relationship and fellowship with God. If I focus on my personal relationship with God, suffering looses its power over me. If I am driven by constantly trying to reduce my own suffering, I become a weak and frightened person. Peter walked on the Sea of Galilee until he took his eyes off Jesus and looked at the storm.
You rob yourself of something. Suffering enables God to make you the person He intends you to be. By some mysterious mechanism, you become a more complete, fuller, and richer person. If you avoid suffering at all costs, you rob yourself of becoming the person God wants you to be.
But those who suffer he delivers in their suffering; he speaks to them in their affliction. Job 36:15
I do not mean to trivialize suffering. It is real, and it hurts. But focusing on our own suffering is not our purpose. To be certain, we are called to try to reduce suffering in this world. But our primary goal and highest priority should not be to reduce our own suffering. How can we possibly persevere? The Judeo-Christian perspective is an eternal perspective. Our present suffering is transient. Glory is eternal. Paul writes, "I consider that our present sufferings are not worth comparing to the glory that will be revealed in us". Romans 8:18
What is the Judeo-Christian perspective of genetic testing? The Judeo-Christian perspective is that knowledge is good. Genetic testing is powerful and good. It should be used to gather information and enrich life, but very rarely to remove it. It should be used to better diagnose disease. It should be used to help direct therapies and monitor the effectiveness of that therapy. If genetic testing indicates difficulties ahead, that advance warning can be used to prepare yourself. Use it to prepare yourself emotionally, physically, and most importantly, spiritually. He will be there to take you through the storm and to make you a richer person.