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Ethical Decision-Making About Prenatal Testing

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The day you have been waiting for is here! You and your husband are sitting on a comfortable couch in front of a table offering coffee and cookies. The walls are covered with images of beautiful, perfect looking babies and soft music is playing in the background. The geneticist walks into the room and greets you with a warm smile. After a bit of small talk, he gets to the point of your meeting. As he opens his file, you are anxious and excited. Out of 200 hundred embryos, the geneticist has narrowed it down to the five best choices. He reads off the specs for Embryo 72 which are as follows: male, with an average risk of prostate cancer and type 2 diabetes, and a lower than average risk of asthma and autism, blonde hair, blues eyes, with less than 50% chance of male pattern baldness, and an 80% chance of scoring in the top half of ACT tests. If this whole scenario sounds like something from a science fiction movie, you are right and yet the reality may not be that far in our future. Huxley’s portrayal in the book, The Brave New World, where racks of “designer babies” are portrayed, may soon become a norm in technologically advanced societies. A recent article titled, “What’s wrong with Designer Genes” addresses the ethics surrounding the controversy of presenting parents with the choice to have prenatal genetic testing for the purposes of delivering a “perfect baby”.

A designer baby is a baby genetically engineered in vitro for specially selected traits, which can vary from lowered disease-risk to gender selection. Prenatal screening for chromosomal abnormalities has been offered for over forty years. However, due to the invasive nature of the procedure and risk of miscarriage, this type of amniotic testing was only offered to older mothers in its earlier stages. New York University anthropologist Rayna Rapp had a prenatal diagnosis of Down syndrome. As a result she chose to terminate her pregnancy. She writes, “The technology of prenatal diagnosis was developed explicitly to allow the selective abortion of fetuses facing serious disabilities because of atypical chromosomes and genes”.

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At present, there are noninvasive prenatal screening tests (NIPT) that involve taking a sample of maternal blood. In 2007, the American College of Obstetrics and Gynecology (ACOG) relea endations that pregnant women of all ages be offered noninvasive prenatal screening for chromosomal abnormalities. This continues to prompt debates regarding the ethical implications of prenatal testing. The goal of this paper is to explain the ethical issues arising from prenatal testing, explain the importance of utilizing such testing with caution, and argue why using this type of testing is not Ethical or Biblical as it has the potential to lead to a society of “designer babies”.

Perspectives on Prenatal Testing

There are three primary perspectives regarding noninvasive prenatal testing: Pro-choice support, pro-life support, and opposition to testing. Pro-Choice Support of Prenatal Testing One argument is that parents who chose to terminate a pregnancy because they are not willing to undertake the responsibilities of caring for a child with special needs are not harming anyone else with their decision. This type of thinking presupposes that there is no moral or ethical issue with abortion. Some proponents support termination because they believe that babies do not have autonomy, defined as “the ability to govern one’s actions by one’s own commitments, goals, and values;” therefore, “because no one can thwart a capacity that does not exist…their autonomy cannot be violated”. Parents state varying reasons for favoring prenatal testing. These include not wanting their child to suffer, or feeling that as parents they are unable to carry the burden of caring for a child with physical or cognitive disabilities. Therefore, they favor prenatal testing to guide their decision of whether or not to terminate the pregnancy. Others desire to know the baby’s potential for life. If testing indicates the baby will have a low quality of life or die from an anomaly, some parents prefer to abort it early on when there is less emotional attachment. In accord with this thinking, some pro-choice proponents of NIPT argue, “Just as we should regard people who never want to assume any of the responsibilities of parenthood as free to avoid procreation, we should regard people who choose to avoid the exceptional obligations to a child with special needs as free to reject that parental role and abnegate any related commitments”.

Pro-Life Support of Prenatal Testing

Pro-life advocates support prenatal testing for the purpose of preparation. It is beneficial for families to have knowledge about a baby’s conditions before birth to allow time for them to prepare mentally, financially, and emotionally to welcome baby into the world. Additionally, prior knowledge gives time for the mother and others to learn about the condition, prepare medically, connect with support groups, and ensure insurance is in place. Also, knowing the diagnosis before birth allows for prenatal grief, which can result in a greater sense of celebration when baby is born.

Arguments Against Prenatal Testing

Many parents decline prenatal testing because it will not affect their decision to keep their baby. They prefer not to undergo a test they do not need. They argue that it is not irresponsible for parents to decline prenatal genetic testing because ultrasounds can identify most of the birth defects that would require emergent intervention after the baby is born. These proponents point out that all suffering cannot be eliminated and for them termination is not an option.

Issues With Prenatal Testing

Prenatal testing must be administered with caution. There is the potential for prenatal testing to prompt unnecessary abortions. NIPT manufacturers have marketed their tests as being “up to 99% accurate,” however, these tests are not FDA regulated, and the accuracy of manufacturer claims has not been established. In fact, some studies have found that a positive test result may be incorrect half of the time. This is problematic since many women make decisions about their pregnancy within a few days of obtaining NIPT results without pursuing further testing to determine accuracy. Additionally, if parents and doctors are willing to terminate a pregnancy based on the fact that prenatal testing has indicated genetic abnormalities that may lead to death or disabilities outside the womb, it is arguable we are on our way to practicing eugenics with the unborn baby. Eugenics is the science of improving a human population by controlled breeding to increase the occurrence of desirable heritable characteristics. Developed largely by Francis Galton as a method of improving the human race. If parents choose to eliminate a pregnancy based on genetic testing, then might they also choose to keep an embryo that has been tested and found to have superior genetics? In fact, genetic testing for superiority is the next logical step. Imagine parents donating their eggs and sperm to be incubated into embryos that are then tested. The parents are then given the choice to keep the embryo’s deemed free from genetic anomalies and the rest are terminated. This idea relates to what is now being termed “designer babies”. In April, a group of Chinese scientists announced a world first: They had modified human embryos using gene editing technology. This may be the beginning of prenatal testing not only to identify genetic abnormalities, but to control genetic superiority.

Responses to Prenatal Test Results

It can be argued that prenatal testing itself is not morally and ethically wrong. It is not wrong for prospective parents to seek knowledge nor is it “irresponsible” for them to refuse testing. With the legalization of abortion, the primary ethical issue surrounding prenatal testing is action taken in light of the results. A person’s view on what to do with the information NIPT provides depends on what they believe about moral status and the degree to which they see value in the lives of people with physical or cognitive disabilities. Others view termination as morally and ethically wrong. The Christian perspective is that regardless of test results or the outcome after birth, it is morally and ethically wrong to abort the fetus because all life is created in God’s image and has intrinsic value because all of God’s creation is good.

Reproductive Justice

The varying perspectives on prenatal testing prompt consideration of ethical principles of justice and nonmaleficence. In biomedical ethics, nonmaleficence does not kill or “deprive others of the goods of life”. Depending on one’s view of life in the womb, terminating a pregnancy in light of prenatal testing can be viewed as breaking the principle of nonmaleficence. Justice relates to fairness and treating people equally. In working towards elimination of disease, it is unjust to use elimination of those who are sick or disabled as a means to this end.

A Case for Life Inside the Womb

The SLED test is a pro-life framework that identifies four arguments for the value of unborn life. SLED makes the case that size and appearance, level of development, environment, and degree of dependency do not determine personhood. If these factors alone determined personhood, one could argue that toddlers and the elderly do not meet the criteria and should be eliminated. Toddlers depend on their mothers to be fed, a teenager is not at the same developmental stage as an adult. Likewise, a premature baby inside the womb is in a different location than a premature baby in an incubator. Yet, the baby in the incubator is not more of a person because because he is outside of the womb. Size and appearance do not equal value and cannot determine personhood. A toddler has the same DNA and genetic makeup that he or she will have as an adult. Likewise, unborn babies still have the same DNA and genetic makeup and are therefore human life. Hence, there is no ethical difference between a human life inside and outside of the womb.

Valuable Lives

A utilitarian determination of every human life poses an issue. What makes a life valuable? Who gets to decide? Prenatal testing can lead down the slippery slope of eugenics. Eugenics is the science of improving a human population by controlled breeding to increase the occurrence of desirable heritable characteristics. There are also issues with where to draw the line when deciding which disabilities or genetic anomalies make a life not valuable anymore. It is unfortunate that, in many ways, prenatal testing portrays a negative social mindset toward disability. The problem does not lie in the testing itself, but in the fact that the number of pregnancies terminated due to genetic abnormalities is increasing. Termination is often justified in relation to the moral status of the fetus, with the premise that he or she is a potential person. Most people concur that they did not make themselves come into existence. If we humans do not owe our existence to ourselves, who are we to say that we can prevent the existence of a human life?

Reaching for Common Ground

Prenatal testing presents a moral and ethical dilemma in America because women have an unrestricted right to choose whether or not to remain pregnant, however, when results are used for knowledge and are not acted upon, prenatal testing can allow for emotional, financial, and medical preparation. Lawyer Anna Franzonello poses an insightful question on this issue. She writes, “Are we really a society so bent on perfection that we do not want children with disabilities or illnesses, or is not enough being done to provide families with support and alternatives to abortion when tests prove positive? The answer is probably both”. The reality is that there is no right answer for how to approach prenatal testing. Although prenatal testing provides the option of selective abortion, “not all women choose testing with abortion in mind”. Unfortunately, many parents with a positive diagnosis of fetal anomalies are not made aware of all of their options. Quick decisions are made before parents understand facts about the condition of their baby, are made aware of support organizations, or know of services such as perinatal hospice and palliative care programs. Perinatal hospice and palliative care provide a positive solution to a diagnosis that is tragic for many. In the case of a terminal prenatal diagnosis, choosing life will honor the life of an unborn child as worthy of continuing until its natural end. Families should be made aware of perinatal hospice and palliative care programs that allow the family to plan both the birth and death of their child and receive guidance on how they can make medical decisions about their baby’s care after birth that will allow them to make the most out of what little time they will have. Families facing diagnoses that are not life threatening, such as Down syndrome, need to be made aware of what life will actually be like and the resources that are available (i.e., respite care, social services, etc.). Pro-choice proponents may not see these options as beneficial, but aborting an unborn baby will not take parents’ pain away. One study found that carrying an anomalous baby to term allows the parents time for proper grieving and resulted in feelings of gratitude and peace. In contrast, abortion was found to cause significant emotional stress (including depression) on the mother.

CONCLUSION

Ethical decision-making about prenatal testing is a complicated topic and should be approached with caution. Prospective parents and medical professionals need to take time to think through both ethical and practical questions regarding these tests. When the SLED arguments, fallacy of utilitarian determination of the value of human life, and resources for families with prenatal diagnoses are taken into consideration, termination cannot be considered just treatment of unborn life.

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