Essay, Research Paper: Bioethics -- Prenatal Screening

Debates on Bioethics have been a central and key in society's thoughts on new and involved medical science, as it conflicts with our own predetermined morals and value judgements. The more advanced our medicine becomes the more we must question, how much should we know about each other, as well as how much should we know about ourselves? The presented case, that of Susan M., provides an interesting look at the right of a parents knowledge of their child's prenatal condition, as well as the doctor's obligation to inform, also including the prenatal child's rights, and the possibility of abortion. With the information presented, one must come to the conclusion, that stringent limits need to be placed information parents can obtain (by prenatal screening) with regards to their future child.
First, the question must be asked, in Susan and her potential-child's case, does she have the right to know her child's future outcome involving a genetic mutation that will most likely not occur for another forty years, expost facto? Looking at Susan's situation it can be determined, that because her knowledge of the child will have no therapeutic benefit on the child, her knowledge will only negatively impact her and her child. Suppose she was to have the test conducted, and the results were positive, her child would potentially suffer from early onset AD. Her choices are limited; she could carry the child to term, knowing full well that the child will, at some point in his or her life, be afflicted with the terrible disease her mother suffered from. Or, perhaps the test comes out positive, and she decides to terminate the pregnancy, resulting in a plethora of moral-ethical dilemmas.
Perhaps Susan had the test done, the results are positive, and she decides to terminate the pregnancy. Disregarding all previous abortion debates, this act can be considered ethically wrong. The first reason being, if the test had come out negative it is likely that she would have carried the child to term. The fact is, her child prenatal or not, should not be terminated if it can lead a productive life. Early onset AD is something, through genetic engineering, may be able to be cured in the future. There is something to be said for hope. The child, with this defective gene, could go on to lead a productive good life, and therefore should have the right to live. Susan and her husband have the opportunity to provide their child with a meaningful life, that in turn could result in a healthy, happy child with all of the benefits of other children. By prenatal screening, Susan is provided with choices that are not fair to her or her child, prenatal or not.
Here it comes to the physician's obligations. Knowing that his patient, Susan, could possibly carry this defective gene and pass it on to her child, should he conduct the test? The obvious answer is no. There would be little to no therapeutic effects for that child. By performing the test, the doctor would not be treating a health related issue, and he would not be correcting anything for his patient's own welfare. The physician is under absolutely no obligations to perform this test, and in fact has more of an obligation not to perform it. His responsibility is to the mother and her child, and by conducting this test, he will be causing an undue burden on the mother-to-be, not to mention the prenatal child. If the information is of little therapeutic value, it's of little value to the patient as well. It is wrong to burden the patient with troubling news when there is little or nothing that the physician can do about it. This burden would result in a very depressed mother, and as a pregnant woman, who is already undergoing great physical and mental distress, it is of little doubt that her decision perhaps would not be informed nor beneficial in any regard. Therefore, the physician, under his sworn oath, would be inflicting harm upon his patient; not to mention, forcing Susan to perform strong value judgements that would be difficult no matter what the case may be.
Returning to the prenatal child's rights, assuming Susan proceeded with the birth, what of its own rights. For example, the health insurance aspects of her decision; The process of obtaining insurance for a child, who will most likely be afflicted with early onset AD (assuming test results are positive) would be rather difficult and costly. There, in turn, is no difference between Susan's child who would knowingly have a disease with a probable outcome, and an individual who could have the same disease without knowing (i.e. Susan). The probability of Susan's future child obtaining reasonable health, and or, life insurance, is most improbable, and therefore -- unfair to her potential child.
It is possible to argue that Susan being the child's mother has the right to know whether or not her child will be afflicted with this terrible disease. One can demonstrate that the patient has absolute right to know what will afflict them or their children if something is irrevocable. However, Susan forfeited that right when she decided against herself getting tested. It would not be fair to her unborn child, for her to have knowledge of its outcome, when she does not know her own outcome. Theoretically, she has a fifty-fifty chance of having this disease, as does her child, being that she has early onset Alzheimer's Disease. When Susan decided against herself being tested she in turn made a decision not to have her child tested.
It is also possible to argue that it is Susan's responsibility to know. It can be said that, although not determining her own fate, it would be negligent on her own part to determine not to have her unborn child not tested. Although at present the child's test's outcome may have no effect upon the child, thirty years into the future Susan's decision could greatly effect the child's life. However, Susan's determination on whether or not to have her child tested, in effect, has a greater number of moral and legal objections; and therefore, Susan has an arguable to little liability on deciding not to have her child tested.
Some may argue that people have a moral ethical responsibility to know. In some cases where people have personal or professional obligations to those around them then, perhaps there is cause for disease identification. In cases of doctors with AIDS or pilots with epilepsy, those individuals have an obligation to identify their problematic diseases out of safety for the public good, in the cases of inhibiting manifestations; however, Susan and her future child's problems significantly differ from these situations. In Susan and her child's case neither one of their diseases, whether they have them or not, will effect society as a whole. For example, if Susan's child were to become an air traffic controller, the likelihood that her child's potential impairment would effect anyone else is rather unlikely. Perhaps even, Susan's child could go on to be a great benefit to society, not to mention the child would be given the opportunity to go on and enjoy all of the wonders of life.
It is possible for one to demonstrate good case regarding Susan's child's rights in the matter. Some might say that, in effect, her child would not want to live knowing the outcome of its life, being detrimental as it may. On the other hand, I would argue, that Susan's child if given the opportunity would want to live life, and be happy experiencing all of the great aspects of life, whether or not it is inflicted with early onset AD.
Perhaps one day, Susan's child would like to know its fate, and the outcome of testing for early onset Alzheimer's Disease. Be that as it may, it should be that child's decision to make. Although Susan feels she has an obligation to know her child's fate, the reality of the situation is, she is worried about the consequences of her own actions. In this situation, this includes herself not getting tested, her unplanned pregnancy, as well as the anxiety she is feeling about the pregnancy. In all of these cases, only a negative result would resolve the situation. Unfortunately, she has little to benefit from positive test results. In any case, Susan's knowing of the results will most likely benefit no one, as there are no positive benefits from a positive test result.
Society, at some point, needs to set up guidelines for situations like Susan's. Limits need to be directly placed on the basis of genetic testing. As well as moral ethical obligations, there are many legal issues to be decided regarding this case. In the cases of the public as a whole, it is unlikely that many would be in favor of lining populations up for genetic testing. Much like Aldous Huxley's book A Brave New World, violations of individual's intrinsic rights to privacy can come about from the testing of individual genetic testing. Although, Susan's case is set upon a micro-level action, its ramifications effect society as a whole. Her responsibility along with her husband's to treat their child, as receiving test results would in fact effect an unbiased individual. Just as people have the right to refuse treatment to themselves, so should their right to refuse genetic testing to themselves.
Although Susan's child is in effect a minor, and under her care and obligations, Susan would be exceeding her child's potential right to privacy by having the child tested for an untreatable genetic defect that in fact would not be noticeable or treatable until the child became forty to sixty years of age. Then, in fact, the child when in a fully conscious state at an age of medical majority could decide for itself whether or not to be tested. In effect, a parallel can be drawn to this potential for disease, and the possibility for the child to become an alcoholic. Knowing what society and the medical community knows about genetic testing, it is possible for Susan's child to be tested for a variety of conditions that could potentially effect its life. In cases such as these, these things should be left up to their natural courses of action. Although forewarning may allow Susan to provide her child a diet and course of medicine that could assist in preventing its genetic defects, the chances that the child will still gain an advantage from selective treatments is unlikely, and in effect the course of following events will still occur.
There is an awful lot to be said for hope. In Susan's case, whether her child is afflicted with early onset AD or not, the chances of genetic engineering provide people like Susan and her child with the hope that someday her child may be cured, and not have any of the symptoms included in AD. That is if her child is effected, which may not even be the case. All in all, for Susan's sake, the child's sake, and the physician's medical obligations testing for an untreatable infliction will provide no positive results, and should be left up to nature. After all, man's decisions on what is right and what is wrong are not necessarily always right. There is just as much beauty in a child such as Susan's as there is in any other child, and in fact we as a society, need to realize that all children are beautiful and deserve the chance to live an unabridged life under the guidance of two loving parents such as Susan and her husband. The fact that Susan is following a positive course in prenatal care (i.e. seeing her doctor regularly), as well as her caring for her mother when she was ill, demonstrates that she is a caring person. The fact is the child as well as Susan would benefit most by not knowing the results of a test of which they have no control over the outcome.