"Genetics provides the ultimate answers to the chemical underpinnings of human existence. Knowing the complete human genome, we will know what it is to be human." -- James Watson, Nobel laureate
No one denies that the acquisition of genetic knowledge and the development of genetic technologies carry significant implications. However, what does Watson mean when he claims that the knowledge we gain from the Human Genome Project (a massive project funded by the federal government) will yield everything we need to know about humans?
With the July 2000 announcement that the mapping and sequencing of human DNA is complete, researchers have been given a virtual roadmap to follow in their efforts to detect and treat genetic diseases. However, does knowing the genetic roadmap for humans really tell us everything we need to know?
Francis Collins, the director of the Human Genome Project, calls it, "the largest biomedical science endeavor ever undertaken." C. Thomas Caskey, the president of the International Human Genome Organization (HUGO), states "No current project in science and medicine is of greater importance to humanity than the Human Genome Project." If this is true, what are the implications? What pro-life issues are at stake in human genetics technology?
First, we must understand that many of the techniques required to treat genetic diseases are still in the concept stage. Most media reports about treating genetic diseases are speculative. Only a handful of therapies are currently available. Whatever prospects genetic technologies may offer, there are an equal number of perils about which to be concerned. Pro-lifers must be vigilant and prepared to evaluate life-altering technologies from not only a humanitarian perspective but a moral one. The newness of genetic technologies requires thorough and thoughtful reflection.
Some of the questions we face when dealing with the human genome are these: Should parents have unlimited reproductive liberty to test their pre-born children for genetic defects or specific traits? Do they have the right to decide the child's fate based upon what those tests reveal? Once the test is done, does a parent have the right or responsibility to employ genetic therapy to improve his child's prospects for life? Should couples who know they are at risk for having children with serious genetic disorders (e.g., cystic fibrosis, hemophilia, sickle cell anemia) be discouraged from bearing children? Do potential marriage partners have a moral obligation to know their genotype and disclose any potential health risks to each other?
Let's look at two broad areas of concern -- genetic testing and genetic enhancement. Testing involves obtaining a small amount of DNA and performing tests to determine the presence of defects. This process discovers actual or potential problems. Enhancement involves manipulating genes to produce desirable traits. So far, this has not been done with humans.
Prenatal genetic testing is used to detect defects in unborn children. Such testing is becoming a routine part of obstetrics, motivated by the concern that children be born healthy and free of inherited diseases.
Alfa-fetoprotein testing (AFP) and chorionic villus sampling (CVS) are not used as often as ultrasound to assess the pre-born child's condition, but this is rapidly changing. Genetic tests done in early pregnancy are useful for discovering such conditions as ventral wall defects, single gene defects (e.g., Down's Syndrome) and neural tube defects (e.g., spina bifida).
Genetic counseling comes with genetic testing. When testing indicates a child has a defect or a gene predisposing him to a disease that may develop later in life, couples are counseled regarding the nature of their child's condition, the likely impact of the disease on the family, and treatment options. Tragically, the majority of children with defects are aborted. Fortunately, most genetic tests yield negative results, and children are born healthy. Depending on the condition, parents may be counseled about potential genetic problems future children may have. Until corrective therapies for conditions such as Down's Syndrome, spina bifida, cystic fibrosis, etc. become available, abortion will remain the "treatment" of choice. Pro-life parents will need to stand up in defense of their unborn children. This is no small matter since most people find it difficult to make decisions that go contrary to the counsel of a physician.
Society as a whole may come to view couples that bear children with birth defects as irresponsible, especially if they forego genetic testing for moral or religious reasons. Couples with handicapped children may be challenged to avoid further childbearing. As prenatal genetic testing becomes more commonplace, social pressures brought to bear upon young couples are likely to increase.
Genetic testing technologies also create ethical problems for pro-life physicians who care for women during childbearing years. Should a pro-life physician tell pregnant patients about the availability of genetic testing, knowing that many babies who test positive will be aborted, knowing that if he does not tell patients he may be sued? Must he stand on principle at the risk of being sued into financial oblivion? This dilemma already prevents many pro-life physicians from pursuing careers in obstetrics.
These cases also present pastors with difficult counseling situations. What do pastors tell couples when a physician advises them to terminate a pregnancy or to forego having more children for genetic reasons? As physicians become comfortable using genetics to diagnose, prevent, and treat diseases, pastors will need to help their people apply Biblical principles to the medical decisions facing them.
These decisions raise questions about the very definition of life, the importance of the quality of life, the purpose of reproduction, and the limits of disease intervention. Genetic research even threatens to redefine the purpose of medicine. The resulting decisions facing doctors and their patients will challenge religious leaders as well. Ministerial schools will need to provide training in the areas of philosophy of science, genetic counseling, and bioethics.
Although most genetic testing is prenatal, it is increasingly used with people of all ages. Testing people for a genetic susceptibility for a disease later in life is controversial. The pro-life community must participate aggressively in this debate. Susceptibility testing has enormous implications for the workplace, the medical industry, and the life and health insurance industry. Testing might reveal a predisposition for developing early onset Alzheimer's disease in one's fifties or Huntington's Chorea disease in one's forties. Imagine the psychological implications for a person who is told this is his future and the impact on family members who learn they, too, are at risk. What employer would not like to have such information about an employee or prospective employee? What insurance company would not like to have such information about a prospective client? Imagine the potential for discrimination and other abuses. The possession of genetic information which reveals that certain individuals possess a high risk for specific diseases may produce a new class of patient, "the nonsymptomatic ill."
Perhaps most troubling is the application of genetic testing for presymptomatic psychiatric disease. This will likely create social consequences related to definitions of deviance and disease. Indeed, the transition has begun. People already speak of the "gay gene," the "infidelity gene," and the "alcoholism gene" even without solid scientific evidence of their existence. Some also attribute to genetics one's predisposition for various forms of mental illness, criminality, job success or failure, exhibitionism, thrill-seeking, and stress.
The American culture is replete with testing. People are tested for all sorts of things from childhood through adulthood. We are enchanted by diagnostics. Test data appear objective. We've developed confidence in using test results to make decisions. There are good reasons for most testing and legitimate uses for test data in decision-making. However, much of genetic testing leads into ethically murky waters.
Like all testing, genetic testing is not only a procedure to obtain information but also a way of creating social categories. Test data can be used to preserve existing social arrangements or enhance the ability of certain groups to control other groups. When there is a social and political consensus about its value, testing can become coercive. We already see this with standardized educational testing.
Creating more options is not always morally innocent. The genetic testing option may soon become the duty to be tested. The option of divulging genetic information to a prospective marriage partner may become a necessity. The option of aborting a defective child may become a perceived need to abort. Genetic tests are powerful tools, and because they are grounded in science and project certainty, they are compelling. However, test results must be interpreted, and interpretations are usually based on a statistical definition of normal.
Despite the dire possibilities, there is much good about genetic testing. It is good to discover a prenatal genetic condition if we can correct it. Couples with a statistical risk of bearing children with particular defects can utilize genetic testing to find out if their pre-born child has the defect. Frequently, genetic testing reveals a healthy child -- one that might have been aborted solely on the basis of the statistical risk. In this respect, genetic testing probably prevents more abortions that it causes.
Pro-lifers should avoid unnecessary opposition to science yet remain vigilant against naively accepting technologies that are not morally neutral. Technologies are based upon theories, and theories emerge from a worldview. Technologies reflect the value system of their inventors. We must not embrace deterministic, stereotyped, sociobiological assumptions about man. The many facets of being human cannot be reduced to purely biological and genetic explanations.
The current problem is that diagnostic possibilities outdistance therapeutic capabilities. We are fairly good at diagnosing the genetic causes of diseases, but we are not yet able to treat them. According to Collins and others associated with the Human Genome Project, it will be several decades before we are able to treat genetic diseases effectively.
There is a temptation to treat the risk for disease as though it were the disease itself, even absent symptoms. Collins points out that there may be long periods of time during which diagnosis may be possible but therapy is not. Should we make life-altering decisions on the basis of risk? This is where our moral decision-making will be challenged.
Genetic research will yield both helpful information and information that will tempt us to make wrong choices. This dilemma makes us question: Is it moral to forsake research that will help us understand the most foundational origins of a disease? Should not we pursue research into the genetic causes of disease? Are some areas of research not legitimate? Even if we agree to curb some aspects of genetic research, it seems impossible to put the gene genie back in the bottle, and genetic research will continue to besiege us with tough choices.
There also are some more basic questions we should ask. Since we live in a fallen world populated by depraved people, all are destined to die (Hebrews 9:27; Romans 6:23) and are in need of redemption. This means that while we absolutely must try to meet the spiritual needs of others, maintaining health is ultimately a losing proposition. Are we then morally obligated to meet all of the health needs medical progress allows? Are we morally obligated to make medical progress to meet even more health needs? Would it be good to eliminate all disease? Shall we view ourselves as unbounded beings with an obligation to conquer all disease, disability, aging, and even death? If not, at what point do we stop? Perhaps the key moral question in this advancing age of biotechnology will be this: As we press forward to break existing scientific constraints, are we doing so to give glory to God or to deify man?
Mr. Blocher is the director of Christian Worldview Institute. He can be reached at (616) 222-1489.