Friday, April 4, 2014

Prenatal Testing for Down Syndrome (2014)

Controversy
illumina comapany logo

Prenatal diagnosis has been an ethical service issue for years; but now there is a new form of blood testing (2012) that helps to make prenatal diagnoses of Down syndrome in babies. “Verifi” is a blood test made by Illumina that doctors can use on the mother in order to help determine any birth defects. The moral ethical debate lies in the decision to genetically test for defects with the intention to limit the chance of having an abnormal baby. These tests should be used informatively, not as a sole basis for the decision behind getting an abortion. Verifi is easier and less invasive than amniocentesis and Chorionic villus sampling (CVS). A sample of your blood is drawn and the genetic material is tested. This test works by using “a technology called ‘massively parallel DNA sequencing’ to count the number of copies of these chromosomes, and then uses a calculation method to determine if there are too many or too few copies of these chromosomes present in your fetus” (Verifi).
The ethical dilemma here is the pros offered by the knowledge of a Down syndrome baby before birth weighed against the negative possibilities of it. From a positive perspective, knowledge of a baby with this syndrome will allow for preparation as to the services and extra care that it will need during its lifetime. Although it is impossible to know how many abortions of these babies there has been due to privacy laws, it is confirmed that around 90 percent of babies diagnosed with Down syndrome prenatally are aborted (Hennessey). The offices where doctors are working in the data that is examined are Mayo Clinics. According to the National Institution of Health, only two of the states with Mayo Clinic locations have statutes in regard to genetic testing. Arizona only requires informed consent for genetic testing by healthcare providers such as Mayo Clinic. Minnesota statutes actually protect an individual from genetic testing requested by an insurance provider. “Insurers may request a genetic test from a family member or individual only if the request pursuant to research that applies to the Common Rule and other criteria are met” (National Institution of Health).

Stakeholders
As such, the immediate stakeholders are the doctors making the decisions to conduct prenatal testing or the parents requesting it. The unborn child is just as much a stakeholder as the parents is in this case. Members of the National Organization of Health are also stakeholders because I will be using the statutes they have created for individual states to examine the laws behind prenatal diagnosis.

Individualism
Trisomy 21; notice the three copies of chromosomes 

In Friedman’s Individualism, the sole obligation of the company is to generate the maximum amount of profit for the owner or shareholders” (Salazar). This theory does not take into account if a decision is moral or not, it only takes into account the end result in terms of profit. Because this is a moral ethical dilemma I think it is only fair to examine each perspective from both a business standpoint and a decision based standpoint. From the standpoint of Mayo Clinics, offering this type of testing will raise the amount of services they offer and thus will raise the overall profit. By definition, providing this testing is ethical under individualism. There is a twist, however. The image that the company will obtain for providing prenatal testing for Down syndrome may cause some of their patients to seek services elsewhere, therefore cutting into the profits. The true solution lies in the amount of losses suffered from relocation of the disapproving patients. I would imagine that if the company was suffering losses that outweighed the benefits of this testing, then they would discontinue the testing. This leads me to conclude that it is an ethical decision to offer prenatal testing according to Friedman’s Theory. The parental decision to do this testing, with morality aside, will prove to be profitable for the family if the testing confirms the condition. Parents can then act how they see fit, preparing early and more efficiently by selecting the most cost-effective options for extra help or care that will be needed. They can also choose not to have the baby, which is profitable because a normal baby would prove to be less costly than a baby with any type of condition such as Down syndrome.

Utilitarianism
Utilitarianism is defined as the consequential decision that brings the greatest amount of good to the greatest amount of people (DesJardins, 29). The intrinsic value that is studied in the “greatest amount of good” is happiness. In this theory, the actions that lead up to the result are as important as the end result itself. To make a decision on the ethics of prenatal testing in a utilitarian view, I examined how each stakeholder is affected. First, there is the baby. If the baby is found to have symptoms of Down syndrome, the blood testing will most likely lead to the denial of its birth. Although there is not necessarily a denial of happiness, there is a denial of life and the opportunity to be happy. For this reason I would say the testing has negative effects, 90 percent of the time as discussed earlier, on the happiness of the prenatal child. The parents will gain happiness in a net perspective from this testing opportunity. The relief they will feel if testing is negative will put their mind at ease among the many possible complications of pregnancy. If the testing is positive, they will be able to plan out how they will manage the care and raising of their child. This will diffuse much stress from the process and make everyone, including the child, happier. The doctors and clinics have similar ways of obtaining happiness from prenatal testing. Both can gain happiness by having more patients (more profit), more knowledge, and more opportunities to help people. The ways they can be negatively affected is to be looked down upon or disliked by the public. Although it is different in different communities, it is safe to say that in the overall perspective of negative vs positive public views, it just about equals out. Therefore, even if there is slightly more negative publicity, the other benefits such as knowledge and helping people brings more happiness to the doctors than negativity. As far as the National Institution of Health is concerned, as long as no laws are being broken, which they are not, then they are at maximum happiness. Overall, there is a lot of happiness provided to most of the stakeholders. This leads me to conclude that under Utilitarianism, the decision to provide prenatal testing for Down syndrome as well as the choice of parents to partake or request this testing is ethical. As a side note, I believe that this conclusion is harder to draw for some people because the baby does not have the ability to make its own choice in the matter. It is the only stakeholder that is unable to make the decision to determine which outcome to select for its own maximum happiness. That is what makes this issue such a fiercely debated one.

Kantianism
Baby without Down Syndrome(left) vs. baby with Down syndrome(right)
in an unltrasound

In Kantian ethics, a decision should come from good will with respect to all others. Embedded in this theory is the formula of humanity (“Act in such a way that you treat humanity, whether in your own person or in the person of another, always at the same time as an end and never simply as a means”-Salazar). This is the first theory thus far that is in blatant disagreement with the practice of prenatal testing. In prenatal testing, the mother is being used directly as a means to determine the condition of the baby who is unable to decide whether it wants the test performed on itself. The clinics and doctors are fully aware of how they are using the mother when they request these tests, and are acting unethically as such. Many cases of child labor stem from this theory, because children are “incapable of rationally and freely choosing their own ends” (DesJardins, 39). As DesJardins also puts it, "The best way to decide what is in someone’s interest is to let them decide for themselves" (39). Because the prenatal child cannot choose at all, it is being used as a means for determining its own opportunity at life. The decision is not being made in the best interest of the baby; it is being used in a selfish manner. The maxims that could be used by the parents and doctor here is: “I will test for Down syndrome in this child so that I can decide to give birth to it or not” and “I will test for Down syndrome in order to most comfortably provide for the child once it is born.” In most cases, the first maxim is being used, which is why the testing does not pass the ethical test of Kantian ethics. For that small population that are truly testing in order to have delivery room preparedness and planned life and medical health, they are using an appropriate maxim. Unfortunately, the baby still cannot choose its own ends; therefore the viable maxim is nullified.

Virtue TheoryThe four virtues that define ethics based on the Virtue Theory are: “courage, honesty, temperance, and justice. Courage is defined as risk-taking and willingness to take a stand for the rights ideas and actions. Honesty is honesty in agreements, hiring and treatment of employees, and customers and other companies. Temperance is ‘reasonable expectations and desires’ (Soloman). And justice is hard work, quality products, and fair practices.” (Salazar). If a thing is good depends on how well it fulfills its duty. Fulfilling its duty depends on the four virtues. First, we must define the purpose of the testing. The purpose of prenatal testing separate from decisions that stem from it is to inform the parents as to the status of their unborn child. The testing does serve this purpose well. The purpose of the facility in regard to the testing is to provide a safe and legal place to conduct these tests. All of the laws talked about are being met, including privacy laws, so it does serve this purpose well. We will determine the ethics of virtue theory based on the virtues of the doctors/parents. The doctors and the clinics are standing up for what they believe by offering these services even though some people look down upon them. As seen by the 90 percent characteristic, most parents seem to be using this test in a manner that allows them to almost cheat the odds and make sure they have a “normal” child. To me, the testing is not used in a courageous manner most of the time. In this scenario, only the doctors are being courageous. Justice is achieved by providing honest results and complying with any restrictions that the states in which they operate enforce. For the parents, justice is achieved by using the test in an ethical way. The correct way to use this test would be to prepare for the birth of the child in the best way possible for that child, not to choose the child that is most desirable. Again, I see the doctors as the sole party that fits the description. Honesty for the doctors would be to be honest with the chances that conducting these tests will often lead to an abortion. To treat the patients fairly, they would comply with their requests as long as they are within the boundaries of the law. The honesty of parents would come from how they decide to act in regard to the life of the child. An honest decision would be one of the 10 percent that use the knowledge to prepare and not to start over. Assuming the doctors are providing their best medical judgment when suggesting these tests, they are acting honestly, but in most cases parents are not. Temperance is hard to define in this case because given the option; people do not want a baby with any kind of dysfunction. Therefore the only way to judge this would be to know if the symptoms of the ultrasounds led to the chances that the baby has Down syndrome. The parents and doctors can be temperate by being realistic with the situation and helping to achieve the most honest results possible. Both are acting ethically under this assumption. We can see overwhelmingly why this issue is such a big one after the examination of this theory. Doctors seem to be blamed where the fault should land on the parents. The doctors are only doing their job to provide information to help their patients, including the babies. The parents are the ones who are potentially violating laws and theories by using the knowledge in ways that are up for ethical debate. I would conclude that doctors are acting ethically under this theory, while 90 percent of parents, unfortunately, are not.

References
Birkenstock, G√ľnther. "Down's Syndrome Test Causes Ethical Dilemma." Down's Syndrome Test Causes Ethical Dilemma. Deutsche Welle, 2014. Web. 4 Apr. 2014.
DesJardins, Joseph R.. "Moral Rights in the Workplace." An Introduction to Business Ethics. Fifth ed. New York: McGraw-Hill Companies, 2014. 29-39. Print
Hennesey, Matthew. "Testing Down Syndrome to Death." The Human Life Review. The Human Life Review, 2013. Web. 4 Apr. 2014.
National Institution of Health. "Policy and Legislation Database - Browse All Records." Policy and Legislation Database - Browse All Records. National Institution of Health, 08 Jan. 2013. Web. 04 Apr. 2014.
Ridder, Malcolm. "Blood Test for Down Syndrome Creates Ethical Debate." Pregnancy on NBCNews.com. NBC News, 06 Dec. 2011. Web. 4 Apr. 2014.
Salazar, Heather. “Business Ethics, Economics, and Individualism” PowerPoint Slides.
Salazar, Heather. “Utilitarianism and Business Ethics” PowerPoint Slides.
Salazar, Heather. “Kantian Business Ethics” PowerPoint Slides.
Salazar, Heather. “Business Ethics and Virtue” PowerPoint Slides.

Verifi. "Verifi Prenatal Test." Expectant Parents. Illumina, 2014. Web. 04 Apr. 2014.

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