Amanda Ivester- Prenatal Genetic Testing- Ethics Paper

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Amanda IvesterEmail: aiveste@g.clemson.eduPhone: 864-650-3746Word Count: 1,180

Pregnancy has always carried a laundry list of potential complications and worries with it. One new worry that expecting parents now face is genetic testing. This prenatal genetic testing can offer a plethora of important information about ones unborn child. Downs syndrome, sickle cell anemia, cystic fibrosis, and Huntingtons disease are just a few of the disorders that can currently be tested for. Parents and doctors alike are left weighing the costs and benefits of these tests. The Committee on Assessing Genetic Risks says that autonomy, privacy, beneficence, and justice are the four important principles that must addressed when dealing with genetic testing (Donahue, 2005). For genetic testing to be ethical, these four principles must be upheld. In many cases it is impossible or very impractical to uphold these ideas and still undergo genetic testing, thus it is entirely ethical to refuse these tests despite the important information that they may offer. Autonomy is defined as the right to decide for oneself which addresses the necessity for voluntary, non-coerced informed consent (Donahue, 2005). Informed consent is the process of making a decision after being presented with all of the information, free of emotional distress. Many states have an opt-out rather than an opt-in process for certain genetic screening, meaning that unless the parents have specified otherwise, prenatal genetic testing will be done (Donahue, 2005). This takes away the parents autonomy. At no point were they ever actually informed of these tests being done, meaning there was no voluntary, informed consent. Another issue with autonomy is the necessity for a lack of coercion. A family history of a particular genetic disease can result in external pressure compelling the parents to have these genetic tests done. This type of pressure can come from concerned family and friends as well as doctors. It would be next to impossible to preserve all the necessary components of autonomy if it were unethical to refuse genetic testing. Simply put it would be an impossible paradox to say that it is unethical to refuse genetic testing because autonomy is one of the most basic ethical principles. There will always be someone who does not want genetic testing, and autonomy means that s/he gets to make that decision for his/herself. Even the law states that pregnant women are not required to have prenatal genetic testing (Prenatal Testing and Counseling).The issue of privacy presents itself with prenatal genetic testing as well. If a person is shown to be a carrier of a genetic disease, should the doctor tell the rest of this individuals family so they are aware they might be carriers? Who owns and controls this sensitive information? (Donahue, 2005). To protect the patients privacy doctors will have to withhold potentially important information from other family members, including the significant other should the woman so choose. Although the issue of privacy may not always be a factor present in prenatal genetic testing, it is a very real possibility and thus it is a fully ethical response to refuse genetic testing. Beneficence is the concept of doing good which goes hand-in-hand with the idea of nonmaleficence, which is the concept of doing no harm (Donahue, 2005). Beneficence deals in large part with ensuring that the benefits of a particular action outweigh the risks. It also deals with making sure the patient is informed and respecting his/her wishes. When trying to do good, providers must weigh the very real fact that genetic testing is very limited. The prenatal test for cystic fibrosis can only determine if the child has two genes for CF, not the severity of the disorder (Halsey, 2005). How much good has really been done in this case? The parent/s can only scarcely begin to prepare because they really have no idea what the outcome will be. Along the same vein of concept, what if there is no treatment for a genetic disorder? You have either left parent/s with knowledge they can do nothing with or possibly caused the woman to abort. In either case, one must ask, have you really done good? Furthermore there is a very real possibility of false positives or negatives. A false positive in particular adds unnecessary stress on the mother. Once again, both parent and provider must ask if they are really doing any good. The concept that is often paired with beneficence, nonmaleficence, means to do no harm. With genetic testing being able to ensure one does no harm can be a very daunting task. Chorionic villus sampling, which is used to test for several genetic disorders, has been linked to birth defects, such as malformations that need to be removed or finger defects (Roan, 2008). As previously mentioned, the knowledge of some genetic disorders can be the deciding factor in if a women aborts a fetus. In this case it is hard to say for certain if one has done harm rather than good. The unnecessary stress of useless knowledge, if a mother were to find out her child had a genetic disorder with no treatment, can cause high blood pressure which can in turn cause birth defects. Justice is the final basic ethical principle that must be upheld in any medical decision. Justice revolves around the idea that everyone will receive fair and equal treatment (Donahue, 2005). This idea can refer to many different concepts. One such concept is this genetic testing being available to everyone, which it is not because it is often very costly and regularly not covered by insurance (Donahue, 2005). Certain genetic disorders most often affect certain ethnicities. If an individual is in what a provider perceives to be a higher risk group, the provider may push for genetic testing. Not only is this an equality issue, it can also become an autonomy issue as well. Perhaps the biggest justice issue of all would occur after the baby is born. If the parent/s chose to have genetic testing done, insurance might charge them more or make them wait for benefits by claiming the parents were already aware of this preexisting condition. It is quite clear that all of these scenarios do not result in fair and equal treatment for all. Autonomy, privacy, beneficence/nonmaleficence, and justice: the four basic ethical principles to be weighed when making any medical decision involving an individual. If one were to take the stance that it is unethical to refuse genetic testing on the grounds of the important information it might provide, that individual would have to find a way to prove these four principles invalid. It simply is not possible to say it is unethical to refuse genetic testing and still uphold these principles. To mandate genetic testing would mean inequitable treatment of those who are more prone to genetic diseases, the possibility of doing harm by causing undue stress, violation of privacy, and lack of autonomy by taking away an individuals right to choose. Knowing all of this, only one conclusion can be reached, it is highly unlikely that any sort of absolute will ever be the most ethical solution. Genetic testing, although a great advancement, is not for everyone, and that decision is absolutely ethically sound.

Works Cited

Donahue, P., Williams, J., & Halsey, D. (n.d.). Ethical Issues in Genetic Testing.medscape.com. Retrieved April 12, 2013.Halsey, D., Williams, J., & Donahue, P. (n.d.). Why Genetic Testing May Lead to Ethical Dilemmas.medscape.com. Retrieved April 12, 2013. Medical Ethics | Prenatal Testing and Counseling. (n.d.).University of Illinois at Chicago - UIC. Retrieved April 13, 2013.Roan, S. (2008, December 19). Prenatal genetic test may cause birth defects | Booster Shots | Los Angeles Times.Blogs - latimes.com. Retrieved April 13, 2013.

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