The advancement of medical technology gives rise to methods and resources with greatly informative potential. Genetic testing is one such evolving tool that can play a part in family planning before conceiving a child. At the same time, the accessibility of genetic testing is a double-edged sword. On one hand, this option can enable prior knowledge of disease inheritance that will imminently lead to death, such as Tay-Sachs Disease, which can allow individuals to avoid both the suffering of the child and astronomical medical debt. But the ability to modify one’s procreative decision based on the “desirability” of certain genetic characteristics raises several ethical issues. Thus, both sides bear valid benefits and risks, complicating the matter and obscuring the favorability for one or the other. In this discussion, the implications of genetic technology in a prenatal context will be explored through different ethical principles and sociocultural factors, including autonomy, ableism, and the history of eugenics.
One argument in favor of genetic testing evokes the principle of autonomy to justify the rights and freedom of choice of prospective parents. This principle protects individuals’ bodily integrity and their right to make autonomous decisions (Church, 2022). Specifically, procreative autonomy establishes the right to choose and control reproduction in having biological children (Burkhardt, 2022). Genetic counseling in a prenatal setting can enable individuals to evaluate a wider array of options that then become available to them. The aim is to arrive at a well-informed decision while accounting for the patient’s goals and values and assessing the potential choices they are presented with (Stoll and Jackson, 2020). To move away from paternalistic attitudes toward family makeup, genetic counselors may take a “nondirective” position and only provide evaluative information that will ultimately leave the choice to the patient (Guidry-Grimes and Veatch, 2020). A patient can only exercise autonomy if there is a choice to be made between alternatives in the first place. To eliminate the option of genetic testing entirely could be considered a violation of autonomy because the individual may now face a limited range of options from which to make an informed decision. Thus, the principle of procreative autonomy is a strong ethical ground to argue for the accessibility of prenatal genetic testing.
Furthermore, as prefaced before, the accessibility of genetic technology can allow prospective parents to learn prematurely whether their child will inherit imminently fatal diseases. Within the shared goal between patients and genetic counselors, individuals can plan accordingly for appropriate interventions to optimize perinatal outcomes. For some patients, prenatal results may lead them to reconsider their decision to conceive a baby, while others may prepare for the child’s medical needs during and after birth (Dukhovny and Norton, 2018). In one case in 2007, a woman learned that she carries the mutation for Huntington’s disease after her child was born, but it is unknown whether the infant also carries the mutation as they are too young to have genetic testing. The physicians had not informed her earlier as the initial diagnosis was actually of the woman’s father, who chose not to reveal the news out of fear that his pregnant daughter would seek an abortion. The woman eventually filed a lawsuit, arguing that she would have chosen to abort her child had the physicians disclosed to her that she carries the gene for Huntington’s disease (Guidry-Grimes and Veatch, 2020). This example demonstrates the impact that prenatal genetic testing can have on prospective families and their decisions.
That all being said, the ethical arguments against the use of genetic testing also hold significant weight. For instance, the decision to have children based on whether certain genes will be inherited can be dangerously consistent with ableism and eugenics. As a brief background, genetic counseling was coined in 1947 by Sheldon Reed and rooted in pro-eugenic ideals of promoting desirable genetic traits while decreasing undesirable ones (Guidry-Grimes and Veatch, 2020). Encouraging or following through with reproduction after becoming informed about “desirable” or “healthy” genetic traits implies that such genes are superior to those that can confer disorders or illnesses (Burkhardt, 2022). Clearly, this sentiment is problematic and discriminatory, while also reflecting that what is considered “normal” is largely a social construct. Nobody can nor should objectively decide which traits are worth conserving. To make matters more complicated, there are disorders within a grayer area where the prognosis and predicted quality of life are less certain (Guidry-Grimes and Veatch, 2020). In these circumstances, it would be even more difficult to decide whether such genes should be conserved. Ultimately, the idea of making prenatal decisions based on favorability of certain genes carries questionable undertones pointing to ableist sentiments.
Attributing a prenatal diagnosis to imminent suffering of the individual is a misconstrued, harmful belief that perpetuates the stigma around disorders and disabilities, no matter their degree of fatality. For example, selection against reproduction based on mental-health disorders can exacerbate such stigma when it is already pervasive enough in society (Kozlov, 2022). Using genetic technology to select against traits that lend divergent characteristics implies that such gene expressions are “lesser” and “undesirable.” In the United States, two-thirds of women terminate pregnancies following prenatal tests for Down Syndrome; Iceland and Denmark have almost a one hundred percent termination rate (Burkhardt, 2022). But if individuals with Down Syndrome can lead happy lives, it feels unethical and ableist to assume that living with some form of disability “precludes the possibility of having a good quality of life” (Guidry-Grimes and Veatch, 2020). Thus, while genetic testing may be useful in screening and tracking imminently fatal illnesses, the availability of such a tool can lead to harmful genetic discrimination regardless of whether that is the original intent.
Finally, regarding the principle of procreative autonomy, there are several factors demonstrating that it is far more complex than simply granting an individual the right to choose. For one thing, this principle is not equivalent to holding bias for or against certain genetic expressions of a child. The ethical guideline of autonomy grants body integrity and self-rule without interference, but this rhetoric should not be conflated with the freedom of conception based on what can be viewed as genetic favorability (Church, 2022 and Burkhardt, 2022). As was discussed earlier, it is unethical to hold ableist and genetically discriminatory attitudes in determining whether an individual should follow through with conception. Thus, it is important to establish that procreative autonomy should not enable genetic bias.
Another point of contention with the argument of autonomy is the sociocultural context surrounding genetic screening. This issue raises the question of whether families are truly able to exercise their autonomy under the weight of societal expectations. The entire concept of genetic testing itself can be considered a violation of autonomy rather than a reinforcement because it holds systemic sociocultural implications that may affect the trajectory of families’ procreative decisions. Once genetic testing has been completed, the interpretation of the results and ultimate decision that is made “does not happen in a vacuum” (Burkhardt, 2022). Instead, the parents may be influenced, directly or subconsciously, by the attitudes surrounding disorders and disabilities. Such sentiments can even arise from a conflict of interests between individuals and their family members, which restricts one’s autonomy in making prenatal decisions (Huiber and van’t Spijker, 1998). In other words, there can often be personal values associated with decision-making once presented with the results of genetic testing (Sheehan, 2015). Because this technology was originally rooted in genetic favoritism, it is difficult to completely detach its utility from the ingrained sociocultural context. While some families may truly only undergo genetic testing to screen imminently fatal genes, it is likely that ableism and stigma have too much of a presence in society for this to be the only motive for every family.
Overall, the emergence of genetic testing is certainly complex because of its powerful advantages and disadvantages on both sides of the ethical debate. It is difficult to assess the risk-benefit ratio for both and predict which option will have the most beneficial impact in the long run. In the face of this challenging dilemma, the reality likely lies somewhere in the middle (Burkhardt, 2022). As of now, I believe that there still needs further oversight of genetic technology before it can become freely accessible in prenatal planning for the public. Genetic testing as an advanced medical tool on its own can undoubtedly have far-reaching impacts, but we may not be able to completely remove its clinical utility from surrounding sociocultural values and attitudes at the moment. As discussed earlier, there are a multitude of disorders and illnesses with less certain prognoses for which it can be unethical to select against. Thus, I feel that we still have a long way to go as a society to work against stigmatization and ableist attitudes before this resource can become widely used. It is not wrong to wish for a good quality of life for a person, but it is unethical to assume that being born with a disability is an automatic life sentence of suffering.
Burkhardt, A.M. (2022, October 24). Human Control of Life: Genetics and Modifying Human Nature [Lecture]. University of Southern California
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Kozlov, M. (2022). The controversial embryo tests that promise a healthier baby. Nature, 609, 668-671. https://www.nature.com/articles/d41586-022-02961-9
Sheehan, M. (2015). The right to know. Journal of Medical Ethics, 41(4), https://jme.bmj.com/content/41/4/287.
Veatch, R.M. & Guidry-Grimes, L.K. (2020). The Basics of Bioethics (Fourth edition, p. 30). Routledge.