As the topic of reproductive rights has grown the past few years, more conversations are starting to surround the topic of maternal and prenatal health. Navigating pregnancy can be daunting due to the number of unknowns. However, we live in a time where technology can help us diminish these fears by providing answers. Prenatal testing is an example of a tool that many women favor or oppose within the medical field. At its core, prenatal testing is a method that allows women to prematurely learn if their fetus is at risk for, or can be diagnosed with, a genetic disorder or a birth defect [1]. Having a fetus tested might seem like the obvious choice for most families. Why not check to see if your future child is healthy? What most people do not consider is that there are many ethical issues surrounding prenatal testing itself, as well as what decisions it can lead to. Throughout this article, I will discuss various arguments of prenatal testing and share my personal belief in the matter.
One approach to prenatal testing is through the directive framework. In the directive framework, physicians are heavily encouraging the idea of prenatal testing on pregnant women, taking away some autonomy with decision-making. When prenatal testing was in the earlier stages of its development, its advertising was done in a way that “implied that couples should participate in order to avoid the birth of an affected child” [1]. In the directive framework, physicians are offering their opinion in a way that pushes their patient in the direction they see is best fit. The ultimate decision to prenatal test is the patient’s; however, the physician’s push towards prenatal testing limits the autonomy of the patient because they did not come to the decision fully on their own. Three reasons support the directive framework. First, prenatal testing provides pregnant women with information that may guide them towards a selective abortion, which could help prevent suffering for the future child. Second, prenatal testing limits the possibility of future suffering for the family. Raising a child with a disability is a large responsibility to take on that requires substantial sacrifices, and some couples may opt to not put themselves in a situation exposing them to the “grief… [of parenting] a child whose suffering cannot be prevented” [1]. The last reason supporting the directive framework is that it can lead to lessening the impact of disease on society. With more families determining the health status of their children during the prenatal phase, more people are considering abortions, which limits the need for programs designed to screen and support those with disabled children.
The second approach to prenatal testing is the non-directive framework, which is the idea that physicians should educate pregnant families about prenatal screening through meetings, pamphlets, suggesting resources, and more, ultimately leaving the decision to undergo prenatal testing to the pregnant person without the influence of the physician. The non-directive framework believes that “health services should adopt a position of neutrality with respect to the outcomes of couples’ reproductive choices” [1]. A situation in which the non-directive framework may be implemented is when a physician notices a slight abnormality in the fetus during an ultrasound. The physician is expected to notify the pregnant person of this abnormality and provide options that can lead to a deeper understanding of what the abnormality could be. In this discussion, the physician may offer prenatal testing as a path the pregnant person can take. If the pregnant person is interested, then the physician may offer to have a meeting discussing what prenatal testing is or recommend good resources to help the patient make a decision. Although the results from prenatal screening may not always be positive, at least the pregnant person is able to have the freedom to navigate their own decision-making. The non-directive framework promotes autonomy, so long as couples are being educated in a meaningful way. In contrast to the directive framework, the non-directive framework is more receptive to families and can lead to beneficial choices.
Although both frameworks offer valid approaches to prenatal testing, they do have ethical concerns we must address. The main ethical concern surrounds abortion. Many women who are faced with a difficult result from prenatal testing may opt to have an abortion for various reasons. Those that are fetal rights activists argue that it is unethical to abort a fetus due to abnormalities. Activists believe that the fetus is its own person and that it should not be up to the mother to decide to prevent the progression of life. Similarly, disability rights activists share some of these views. They do not believe that abortion is always the right option because many people with disabilities report that they live a happy life. Disability rights activists also highlight that prenatal tests cannot fully predict the quality of life for a child, as it is a subjective matter that changes amongst different diseases and people [1]. The ethical concerns of abortion will always be a topic of discussion when assessing the efficacy of prenatal testing. However, it is not the only ethical problem.
Another ethical issue that surrounds prenatal testing is information overload, which is more prevalent in the non-directive framework. Information overload is when health providers present large amounts of information to a couple, causing couples to feel confused, overwhelmed, or distressed [1]. Prenatal testing is a complex subject that needs to be presented appropriately to couples undergoing any screening; however, physicians need to pick and choose what is most critical to share. Physicians generally agree that health providers should share relevant information about “(1) the characteristics of any condition for which a screen is offered, (2) the characteristics of any screening tests that are offered, and (3) the implications of any test results that may follow” [1]. Information overload becomes an ethical issue when physicians begin to pick and choose which disorders they feel are appropriate to educate families on. While it may be difficult to give in-depth explanations about every disorder, choosing to educate people about some over others is not fair to those who may have specific genetic traits within their family. For example, down syndrome is the most common chromosomal trait, making it more likely to be shared with families than Tay-Sachs, which is not as common [2]. In addition, information overload may infringe upon one’s autonomy. The standard person most likely does not have any medical background and may struggle to follow information provided by health professionals surrounding prenatal testing [3]. It is crucial that prenatal testing is educated in a way that still allows the pregnant family to be of sound mind when making life altering decisions. Women have discussed how they feel their lack of knowledge surrounding prenatal testing decreases their confidence and allows third party opinions to hinder their original thought process [3]. Keeping health systems honest and easier to navigate for patients allows pregnant families to feel more secure.
Prenatal testing can also be used to identify if drugs are present in the fetus. While this may appear to be a great precautionary measure to ensure the health of the fetus is stable, it also has many racialized undertones. As physicians are assessing the health of the fetus, they may opt to do a precautionary perinatal drug testing. If a pregnant person has disclosed previous substance use to their physician, they are more likely to be tested. However, if a patient is communicating that they have never used substances and there are noticeable concerns in their fetus, they are also more likely to be tested. When patients do not share their substance history, physicians are faced with deciding whether a drug test is necessary. It has been found that “Black infants at a Midwestern medical center were 31 percent more likely to be tested for drugs by their pediatric providers than White infants” [4]. This is a pattern seen across various drugs, creating large racial disparities in the healthcare field. As Black infants are more likely to be tested for drugs due to racial inequalities in newborn drug testing, these families are also at a higher risk for child welfare to get involved and separate families. For example, unintentionally testing positive for cannabis may cause child welfare to get involved. While “cannabis exposure alone does not require additional medical care at birth” it may not “be ideal for fetal development” [4]. Cannabis is not federally regulated, meaning testing positive for it may lead to different disciplinary action in various states. Currently, the 2016 Child Abuse and Prevention and Treatment Act (CAPTA) enforces states to arrange care for newborns in these situations, such as notifying protective services [4]. However, some states, like Pennsylvania, “are trying to individualize their response to hospital reports of newborns who test positive” [4]. Although prenatal drug testing can save the life of a fetus, it becomes an ethical problem when it targets specific minority groups to a larger extent. Achieving racial equality in the field of medicine requires going to the source and altering the biased foundations instilled in our healthcare systems.
When approaching how to determine the health status of a fetus, it is important to assess the pros and cons of prenatal testing. A combined use of the directive and non-directive framework can be beneficial when helping couples make informed decisions about prenatal testing. If a physician notices a serious abnormality in a fetus, it could be beneficial for them to apply the directive framework and push for prenatal testing to the pregnant person, infringing upon their autonomy. On the other hand, following the non-directive framework and properly educating a couple may allow for the couple to make an autonomous decision regardless of what their physician might recommend. As technology allows us to diagnose conditions earlier in pregnancy, it is our healthcare system’s job to ensure that those implementing technology into their practices are equal across every medical service. Situations in which Black communities are targeted at higher rates and are faced with severe consequences more than the average White family are unacceptable and calls for a systematic change. Prenatal testing is a great invention that can help us save many lives and better prepare families for the needs of their unborn fetus, but it can become a more effective service if we begin to prioritize educating families, offer solutions and alternatives rather than passing judgment, and minimize unnecessary testing.
References:
1. Stapleton, G. (2017, June). Qualifying choice: Ethical reflection on the scope of prenatal screening. Medicine, health care, and philosophy. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5487727/.
2. Centers for Disease Control and Prevention. (2023, October 10). Facts about down syndrome. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/birthdefects/downsyndrome.html.
3. Gates, E. A. (1993, September). Ethical considerations in prenatal diagnosis. The Western journal of medicine. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1011355/.
4. Montoya-Williams, D., & Fleishman, R. (2023, August 28). Confronting the harms caused by racism in perinatal drug testing. https://www.healthaffairs.org/content/forefront/confronting-harms-caused-racism-per inatal-drug-testing.