Genetic Testing

Question Answered step-by-step Genetic Testing Advances in genetic testing have the potential to… Genetic TestingAdvances in genetic testing have the potential to revolutionize how physicians diagnose and treat patients. Currently there are more than 2,000 genetic tests available to physicians to aid in diagnosis and therapy for more than 1,000 different diseases. Gene testing is generally performed for the following reasons:conformational diagnosis for a symptomatic individualPR symptomatic testing for estimating risk of developing diseasePR symptomatic testing for predicting diseaseprenatal diagnosis screeningnewborn screeningpreimplantation genetic diagnosiscarrier screeningforensic screeningpaternal testingFor example, we can test couples for sickle cell, a disease that deforms red blood cells into thin, elongated sickle-shaped forms and causes anemia, cough, and muscle cramps. Sickle cell occurs only when both parents are genetic carriers of the recessive gene. If both parents are carriers, there is a 25 percent chance that the child will have the disease. Is this too much of a risk for parents to take? Depending upon how paternalistic we are, we might(1)not allow them to have children,(2)suggest strongly that they do not have children,(3)refuse to pay the medical expenses (this would be a decision for insurance companies and/or government), or(4)merely leave it up to the parents whether to take the risk.Most would leave the decision up to the parents, but some would argue that the parents should not be allowed to have a child when the risk is so high. It is argued that it is unfair to bring a child into the world knowing that it will have such a heavy burden to bear.Sickle cell is instructive, however, in that it is a disease that primarily afflicts people of African descent. To refuse to allow people children who are members of a minority may suggest racist motives. But there are other diseases that are not so selective. Are we to restrict people afflicted with nonracially connected genetic disease? Many people believe that it is their right to bear children, however they turn out. It is further argued that there are many afflictions that are not genetically caused or cannot be tested for. Why might such people be allowed to be born but not those with a disposition to diseases we can test for? The assumption here is that existence is a good thing; for some it may not be, and then testing would be preventing injury. This raises a deep problem: Can existence be an injury?At first glance, human existence could be understood as an injury in utilitarian terms if the prospective life would likely contain more unhappiness than happiness. But this will not do, because ordinary life is a veil of tears for many people. To be useful for our purposes in the argument that asserts that existence can be an injury, it must be the case that bodily or mental impairment must be significantly greater than that which most people must face. This is certainly true for many diseases, and this would provide us with grounds to argue that existence can be an injury; therefore, it would be immoral for such a person to be brought into the world.Some argue that the perspective employed in such an argument is not the correct one. The proper perspective is that of the person afflicted, and from such a perspective any sort of existence may be preferable to none at all. It may be that great suffering may be endurable if just a little happiness is possible, and this is almost always the case. There is also the problem of anticipating what a future person would prefer. Given the difficulties of such calculations, some argue that there can be no good argument against having children.A middle ground may be found by referring to actual cases. Some diseases offer only a brief and painful existence, while others are so seriously painful and prolonged that the question of a worthwhile life is out of the question. On the other hand, some diseases are not as severe. Take, for example, Down syndrome. Children with Down syndrome are afflicted with serious problems, but the severity varies widely. It is often pointed out that children with this condition frequently lead happy lives.Some argue that we must also never underestimate the human spirit and its ability to overcome adversity. As a notable example, Helen Keller is known for having overcome devastating odds to lead a fulfilling life. The response to this argument is that one case does not a policy make. We must ground any moral policy in the reality of the overwhelming majority of cases. Policy should aim at the majority, and exceptions to the rule—the hard cases—should be regarded as exceptional. It may be too much to expect that all those with Helen Keller’s afflictions be able to achieve what she did.In the NewsCan You Handle the Truth?A Silicon Valley firm created a personalized testing service for $99.00, enabling customers to send a spit sample and get back a detailed picture of their genetic makeup. The report provided an analysis of their ancestry and also told them whether they have genes predisposing them to any one of 254 hereditary diseases, including diabetes, heart disease, and breast cancer. In November 2013, the Food and Drug Administration (FDA) ordered the company to stop issuing the health analysis component of the report. The company had to seek approval from the FDA to provide these health reports to their customers. Almost two years later, in October 2015, the company succeeded in getting approval to offer customers information on 36 inherited disorders, far fewer than the original 254 diseases.1.  Is this overreaching paternalism or rational regulation?2.  What can an individual do with information that tells them they are prone to heart disease, cancer, or Alzheimer’s disease? Is it useful or dangerous?3.  Should medical analysis be provided in this manner?4.  Should individuals receive this information without appropriate genetic counseling?        Health Science Science Nursing AH 210 Share QuestionEmailCopy link Comments (0)