Ever new advances in medical genetics, diagnostic technologies, and assisted reproduction create new opportunities for choice and control in human reproduction.
The most familiar of these opportunities, prenatal diagnosis, is now routinely offered as part of prenatal care. Most often performed through blood tests, ultrasound, or chromosomal analysis, prenatal testing is used to identify major genetic and congenital abnormalities in a developing fetus. The information gained can be a deciding factor in whether parents continue a pregnancy to term. For prospective parents, the opportunities for prenatal testing raise questions of whether to test, what a diagnosis means, and when pregnancy termination is morally warranted. These often agonizing decisions can challenge long-held family values, religious beliefs, and sources of spiritual meaning.
Why me?
Perhaps nothing in the experience of parenting is as devastating as the discovery that a long-awaited child has a birth defect. Reactions of shock, disbelief, and grief are often accompanied by feelings of guilt and responsibility. Some blame themselves for behaviors such as drinking or smoking during pregnancy; others may blame themselves or their parents for passing on the culprit gene. Even if parents had not knowingly engaged in any actions that could have caused the birth defect, many may believe that they were responsible in some way.
Parents may also find their dashed hopes are accompanied by religious doubts: "What have I done for God to punish me like this?" "I did everything right, and look what happened." "Why does God let such terrible things happen to innocent children?" Or parents' spiritual values may provide strength and commitment, framed in responses such as "God won't give me more to handle than I can take," or "This child is a special gift and opportunity for me."
Genetic counselors, primary care physicians, nurses, and others who inform prospective parents of their testing alternatives also provide support as parents make their decisions. How these care providers respond to their patients' religious beliefs and spiritual values can contribute to parents' recovery from loss and their willingness to try again to conceive. In the face of their patients' spiritual questions, care providers must be alert to their own beliefs and how they may influence their responses and be sensitive to the potential complexity of psychological and spiritual issues accompanying major loss. If the religious import of parents' circumstances and choices seems to be overwhelming, it may be appropriate to enlist the help of trained professionals in pastoral care.
Counselors must be especially alert to the possibility that patients' religious explanations of tragedy may increase their burden of guilt. Notions of original sin and divine retribution can be found in some religions as well as in New Age spirituality. Appeals to God's will or any other form of intentionality in the universe not only provide little comfort, they beg the question of what kind of God would willingly impose suffering. Rather than attempting to solve the mystery of why bad things happen to good people, counselors may best alleviate parents' guilt by focusing on the medical facts and the specific biological process and mechanisms that produced the particular disorder.
What now?
If receiving a prenatal diagnosis of a disorder is traumatic, it pales in comparison with the decision that follows. There, parents' alternatives are either to continue the pregnancy, knowing their child will be disabled in some way, or to terminate it. If they choose termination, they may find themselves wrestling with the morality of abortion in the midst of their grief. Values such as the sanctity of human life, unconditional love of one's children, and fears that a decision to abort the fetus implies "playing God" may conflict with concerns for other family members, burdens to society, and doubts about one's ability to provide for a child with a disability.
When deeply held values or beliefs conflict, there are rarely answers that are clearly "right." At best, there is an answer that is most acceptable for parents at that particular time in their lives. Because reproductive decisions are so personal and private, genetic counseling has evolved as a nondirective practice in which counselors try to help parents arrive at the decision that best reflects their unique circumstances, values, and religious beliefs at that time. To this end, counselors typically provide their patients with information and unconditionally support their patients' decisions but refrain from making suggestions or recommendations. Rarely, when parents are incapable of making a decision yet one must be made or when one decision offers a clear therapeutic benefit over another, counselors may offer more directive guidance.
Where are we going?
The increasing opportunities for reproductive choice are creating new spiritual and religious challenges not only for prospective parents and genetic counselors, but also for society as a whole. For example, those who provide genetic counseling services have frequently been portrayed as contemporary eugenicists, as gatekeepers to a genetically stratified society. By participating in practices that lead to selective abortions of disabled fetuses, they have been charged with "playing God" and "commodifying" children. By unconditionally supporting their patients' choices, they have been perceived as condoning not only sex-selection but also overt discrimination against people with disabilities. Although these criticisms are overly harsh, they have some basis in fact and have raised the question of whether the current policy of unqualified respect for reproductive choices is sustainable. In addition to these issues in prenatal testing, the extent of the correlation made between DNA and human identity is central to the debate over human cloning and the spiritual uniqueness of individuals. For theologians, a critical question is how our new medico-scientific powers change our understanding of God and God's purposes for us.
In a culture dominated by scientific values, in which every medical advance is hailed as evidence of progress, there are undeniable pressures to make use of the latest medical technology. When these technologies challenge long-held social and religious values, we are tempted to seek clear boundaries for human action—choices that should not be made, paths that should not be taken. The tension between innovation and tradition, between change and stability, creates stress for individuals and society as a whole. From a spiritual standpoint, we would do well to remember that as our technological powers tempt us toward ever increasing control over life and death, there is a limit to our abilities to truly understand what motivates individual choices and to anticipate the consequences of our individual and collective actions. For these reasons, our surest path toward beneficent and humane use of new reproductive technologies lies in listening carefully to the individuals who have already used them and the genetic counselors who have accompanied them in their decision making. Their stories, more than any rigid ethical principles or theological bottom lines, contain the truths that will guide us safely into our reproductive future.
Mary Terrell White, PhD, teaches medical ethics at Wright State University School of Medicine. She is a graduate of Harvard Divinity School and the Institute for the Medical Humanities in Galveston, Texas. Her research interests include issues in genetic testing and counseling and ethics in human reproduction.
