The World’s Canaries in the Eugenics Coal Mine: The Ethics Behind the Patterns Following Belgium and Denmark’s Acts of Legal Determination of the Privilege to Live and Die
- Abigail Wall
- Jul 22, 2025
- 30 min read
Updated: Oct 7, 2025
Table of Contents
Abstract
Aims and Background
Framework
Denmark
Belgium
Ethical Considerations
Conclusion
Abstract
The recent results of Denmark's 2004 policy to offer universal prenatal screening and Belgium's 2002 policy to legalize are similar and allow to be subject to comparison. The notion and selection of life results in a society that practices a hierarchy of who deserves to live and die. Therefore, the policies act as an implicit determination of the best-fit members of society and represent the value of life at large. The emerging moral risks prove that these issues are "canaries in the eugenics coal mine." The patterns that have arisen from the universal prenatal screening for the Trisomy 21 population in Denmark and the 2014 amendment to include minors and the mentally ill to the legalization of euthanasia in Belgium are morally hazardous and portend a future of global eugenics practices.
Aims and Background
Notes from an Advocate
In October of 2017, the American Congress held a panel for disability rights and featured speaker Frank Stephens, a Special Olympian, actor, and disability rights advocate. Stephens spoke to the members of Congress with the message that there is a high benefit in granting life to someone like him. He uses this platform to urge the allocation of funding and inclusion for all people with disabilities, declaring that he is "a man with Down syndrome and [his] life is worth living" (00:47-1:00). To such a statement garnered roaring applause not only from the members of the committee, but the numerous audience members also living with disabilities. (Friedersdorf). Stephens began his declaration warmly, yet sternly, representing the important yet moral essence of such a purpose.
"Mr. Chairman and members of the committee, just so there is no confusion, let me say that I am not a research scientist. However, no one knows more about life with Down syndrome than I do. Whatever you learn today, please remember this: I am a man with Down syndrome and my life is worth living" (00:00-01:01).
Stephens’ joy was contagious, awarded with laughter and dedicated attention from all listeners. His presentation drew in his audience and held them to his purpose as he continued to testify. He transitions into a profession of how lucky he is to have such a life lived to its fullest potential.
Seriously, I have a great life! I have lectured at universities, acted in an award-winning film and an Emmy-winning TV show, and spoken to thousands of young people about the value of inclusion in making America great. I have been to the White House twice––and I didn't have to jump the fence either time. Seriously, I don't feel I should have to justify my existence (02:23-3:18).
Using his last statement to cultivate frustration against ableism in the world, Stephens shifts his tone and calls out practices that have made it so he needed to justify his existence. He mentions the coinciding nature of the disability population and abortion rates, all while generally denouncing systems of prejudice and discrimination. In his critiques, he references a key phrase. His experience and research led him to state that "[people with Down syndrome] are the canary in the eugenics coal mine. [They] are giving the world a chance to think about the ethics of choosing which humans get a chance at life" (04:30-04:50). The world's policy, practice, and patterns have all created a canary in the coal mine, making it vital to take a step backward and think, and act, on solutions and progress.
Proposal
I will explore the methods, values, and principles of Denmark's noninvasive, universal prenatal screening and Belgium's legalization of physician-engaged euthanasia. By studying the emerging moral risks and social patterns that represent how these medical advancements seek to prove whose life matters most while connecting the theme to life and death and identifying similar treatments, I intend to point out the rising rates of the use of said medical practices and explain how the patterns expose similar risks. In looking at all research and theories, my practice of analyzing to dissect the more significant issues of exploitation and the value of life in practices of science, law, and culture will portend a conclusive connection between the two topics. My analysis will provide results in an effort to discover if the patterns developed in these two countries demonstrate harmful consequences that threaten the lives of disabled and marginalized groups. By examining the plethora of texts from the last hundred years through the lens of Kantian ethics, slippery slope, and the value of autonomy, I will consider the ways in which these examples of seemingly virtuous advancements can replicate consequences and unethical practices.
Framework
Virtue Ethics
A fair approach to the description and analysis of these topics is the framework of virtue ethics, a framework that is primarily concerned with and evaluated by goodness and acting with virtue and excellence, the act of taking morals into consideration (Athanassoulis). The potential to flourish and develop into an entirely virtuous being is at the heart of virtue ethics as well as the disability rights movement, which will be discussed.
Consequentialism
Virtue ethics is incurred with consequentialism, as consequentialists regard the significance of an ethical ordeal apart from the intention. (Gier). Consequentialism is regarded in contrast with virtue ethics. While virtue ethics maintains the benevolent belief of the value of human life, consequentialism helps to provide the patterns that evolve from the differentiating beliefs in virtue ethics.
Kantian Ethics
Another illustration of the extent and importance of human morals is demonstrated through Kantian ethics. Developed by German philosopher Immanuel Kant, the ethical framework argued that morals were derived from principles of rationality in acting morally and in accordance with natural desires. (Johnson and Cureton). He also argued, and this paper will comply with, that the presence of self-governing reason of self allows for each their own to possess equal worth and value. In terms of disability, Kant argues that basic status does not vary based on any level of capacity for performing abilities. There are no degrees of morality. He also notes that infants and young children nearly always have a moral nature that defines and proves one's terms of a valuable life.
Slippery Slope
The framework and practice of the slippery slope theory represent the potential for danger. When regarding patterns and potential harm, as well as brainstorming solutions, slippery slope theory provides intel on a harmful future. As early warnings of danger come about, fallacies and paradoxes develop in an attempt to understand where and when exactly a society goes too far. To compare this "little-by-little" argument, known as the Sorites paradox, to sand particles, one would have to be responsible for determining when particles of sand become a hill; this is significant to the specificities of timely solutions, tracking and charting when something becomes dangerous. Sorites paradox claims that one cannot distinguish a transition between two slowly-shifting states. (Hyde). Not only is it impossible to create a distinction as the transition would occur in a continuum, but it is also highly subjective; one could think it is not even happening at all. Specifically referencing disability, disease, and turmoil, slippery slope allows the ability to ponder how situations and reflections would shift if society continues to follow the same path, in which these cases are predicted to continue their patterns.
Autonomy
The value of autonomy is significant regarding the personal privilege of autonomy and is acknowledged as vital. The significance of personal autonomy in decision-making is acknowledged and not shamed or picked apart. However, in terms of looking at large patterns in cultures, autonomous decisions are analyzed in the sense of community thought.
The question is begged to ask how and why autonomous decisions are separate yet similar. The separation of moral belief and autonomy is established through Kantian ethics as correlation and coveted naturally. However, the regard for personal autonomy is exceptionally high. According to his philosophy, all humans have an equal capacity and threshold for full moral status when born. Such capacity means that even infants or people with severe cognitive disabilities have high status in moral responsibility, with the capability to be benevolent and enlist purity. (Wasserman et al.; Kain 66). The value of one's life, according to Kantian logic, is autonomy, creating full responsibility. However, by this logic, when autonomy is removed, one gets less and less classified as a person. Is there an odd, gray area? Where is the switch from a classified person in society? In what ways do societal pressures and norms limit autonomy, and in that realm, when this occurs, does this express a society's desire to eliminate this type of person? By the logic of capacity and autonomy being an intrinsic element in one's humanity, autonomy is the thread that weaves the two cloths of the value of life and early warnings of danger.
Canary in the Eugenics Coal Mine
Canary in a coal mine is an idiom that represents the potential harm in society and advancements. In the context of the issues and patterns of results of prenatal screening and euthanasia laws and practices, the idiom represents the impact of these advancements on society. The definition of this idiom pertains to someone or something that is an early warning of danger. The history and etymology of the idiom refer to caged canaries that miners would carry down into the mine tunnels with them, where if dangerous gasses such as carbon monoxide are collected in the mine, it will kill the canary before killing the miners, thus providing a warning to exit the tunnels immediately. In the field of bioethics and with the theme of advancements to the point of no return, it is vital to keep in mind and discuss the early warning signs as they present themselves.
Eugenics
The concept of eugenics is an idea developed and "invented" by famous geographer Sir Francis Galton. Eugenics demonstrates the idea and approach of selectively breeding and reproducing solely desirable traits to improve future generations (Aubert-Marson). The idea of improving or purifying the human race was at the center of the efforts of the Nazi regime to justify their systematic sterilization and extermination of Jewish people, people with disabilities, and members of other groups deemed inferior. The term eugenics is highly outdated, per se, yet it seems to creep beneath the surface and slyly Influence and replicate itself in ways to be discussed.
Disability Rights
Regarding stakeholders, the disability rights movement is vital to help understand the experience of those who have not felt the "value" of their physical body. It is unfair to base perceptions of someone's humanity - to value their lives - based on their ability or inability to do something or lack thereof. Even the etymology of the word "disabled" solely describes their abilities, not their character. Disability is just that, a disability, nothing more, nothing less . Disability has nothing to do with personhood. What is the significance of social and internal biases stressing and emphasizing one's abilities? Consider the etymology of the word "disabled." It addresses ability - but says nothing about character. Personhood and disability are, by the structure of the word, independent of one another. The issues can be connected with bioethical terms, the framework of virtue ethics, and the backbone of disability rights.
Denmark
Denmark Legislature
Denmark, since 2004, has legalized and offered noninvasive prenatal testing to all Danish women. It became the first country to offer this practice free of charge to all citizens, and it is widely used, with a high uptake of over ninety percent of pregnant women who choose to take the test (Sagi-Dain et al.; Gadsbøll et al.). This prenatal screening has led to advancements in discovering harmful problems in the fetus of a mother. The significance of most women opting in for the test shows how procedural it is to include in the pregnancy of a Danish woman. There are multiple different types of tests that use different tools and serve different purposes, all to be discussed.
Prenatal Screening
Prenatal screening is the practice of testing a fetus to see if it has any known genetic abnormalities or anomalies. Prenatal screening frequently involves drawing blood from the pregnant person and sometimes inserting a needle into the uterus to withdraw amniotic fluid for analysis. There is invasive prenatal screening, where physicians collect cells by inserting a needle into the uterus and collecting fluid. There is also noninvasive screening, where cells are collected by drawing blood from the pregnant woman (National Library of Medicine). Recently, most tests have switched to noninvasive. It is critical to not only understand the physical differences between the two types of screening but to understand the ethical differences of a test that can not only affect the safety of the fetus but the safety of the mother. It is also the role of the genetic counselor to bestow the information to the mother, leading to potential harm in the tone of language, which has the potential to coerce the mother. This coercion could be harmful when a fetus shows a non-fatal disability and complicates the stakeholders' responsibility.
Trisomy 21
An example of a non-fatal disability is the genetic anomaly Trisomy 21, commonly referred to as Down syndrome. Trisomy 21 is when chromosomal DNA replicates itself three times instead of two times in chromosome 21. Trisomy 21 can cause some learning disabilities and different facial features, such as a flattened face or a smaller distance between the eyes (Children's Hospital of Philadelphia). Trisomy 21 has a long life expectancy, is non-fatal, and falls on a spectrum of function. Therefore, the weight of this disability and the child's potential is very subjective and falls on the stakeholders involved, leading to the necessary decisions made following receiving the test results.
Autonomous Decisions
While the "right to choose" is often swept up in the Pro-Life versus Pro-Choice worldwide movement regarding women's reproductive health, it is essential to differentiate the two issues and cease using them interchangeably. These decisions fall under the value of autonomy. The autonomous decision falls under the mother's perspective, desires, and ability to choose. Women that choose to take the test enter knowing the possibility of discovering a genetic condition, abnormality, or disease. An example of such a genetic condition is Tay-Sachs, which is fatal and extremely painful until death around ages 3-5. Due to the prenatal screening itself being an opt-in program, the women have already agreed to receive the results. (Mayo Clinic Staff). What to do when a test reveals a genetic anomaly that indicates that the fetus will be born with a condition like Trisomy 21, for example - specifically, whether to have an abortion - is a personal, private decision that should be autonomous. However, as a society, we must consider the sum of these personal and private decisions. When the sum of these personal and private decisions is the near-universal abortion of fetuses with a particular anomaly or problem, we have to ask ourselves: Does this reflect something bigger? Does this reflect potential harm and danger in society?
The Harm of Prenatal Screening
The harm and danger of the test in itself reflect the intrinsic values in society, and when the results follow through with and reflect the potential harm, changes must be made to reduce this danger. However, the test in itself is not maleficent. Prenatal testing provides the benefit of predicting and testing the health and safety of one's fetus or mother. However, it has led to the consequence of choosing and "changing who gets born and who doesn't." This idea of choosing and selecting who is born in society is "just the beginning" (Zhang) of a more significant problem at hand, specifically one of a slippery slope. The significance of noting that this testing is an early warning of danger represents the potential for a repeat of history with modern-day eugenics. The testing results are an early sign, the beginning, of a future of danger if continued without acknowledgment. The beginning, in this sense, claims that, as a society, we are at the top of a slippery slope; we have the potential to slip down. Have we considered if we are already slipping down? Results from prenatal screening may signify that we have begun to descend.
Denmark's Results
Trisomy 21 has been at the height of the potential danger; as previously mentioned by Frank Stephens, "[they] are a canary in the eugenics coal mine" (04:30-04:38), thus showing that the effect that these results have signified is represented by the Down syndrome community and has the potential to lead the way and predict the ways in which this could spread to the disability community as a whole. In the over 90 percent of women who took the test, when they were presented with the fact that their children had trisomy 21, they chose to abort the child. In 2019, only 18 children with Down syndrome were born in the entire country, in comparison to the over 6,000 children with Down syndrome born in the U.S. each year (Zhang).
Effects on Disability
In the context of the spectrum of disability, Trisomy 21 is very functioning and allows for long, joyous life. However, even while knowing this, Trisomy 21 was one of the first genetic conditions to be routinely screened for in utero. Thus, such results from the abortion of Trisomy 21 remain the most morally troubling because it is among the least severe. It is very much compatible with life, a long, happy life. To study people with Down syndrome's self-perception and rates of happiness, healthcare and social work residents Brian G. Skotko, Susan P. Levine, and Richard Goldstein enacted an analysis, summarized in their posted abstract from their article, "Self-perceptions from people with Down syndrome."
"This study asks people with Down syndrome (DS), ages 12 and older, about their self-perception so that their information could be shared with new and expectant parents of children with DS. We analyzed valid and reliable survey instruments from 284 people with DS on the mailing lists of 6 non-profit DS organizations around the country. Among those surveyed, nearly 99% of people with DS indicated they were happy with their lives, 97% liked who they are, and 96% liked how they look. Nearly 99% people with DS expressed love for their families, and 97% liked their brothers and sisters…In our qualitative analysis, people with DS encouraged parents to love their babies with DS, mentioning that their own lives were good. They further encouraged healthcare professionals to value them, emphasizing that they share similar hopes and dreams as people without DS. Overall, the overwhelming majority of people with DS surveyed indicate they live happy and fulfilling lives" (Skotko et al.).
This blend of Trisomy 21 and canary in the coal mine idiom for selective reproduction represents the discussion of which lives genuinely matter. When discussing and reflecting on the pattern of culture, it begs whether or not this deteriorates the value of life. Although few explicit voices preach for the elimination or extinction of Down syndrome, there are reflections of multiple individual choices that represent this idea (Zhang).
Reflection of Culture
This rise of aborted fetuses with Trisomy 21 indicates danger in a culture. The harm of these rising risks is prevalent yet not explicitly mentioned. It does seem to reflect something more: an entire society's judgment about the lives of people with Down syndrome. The decision is individual, but the consequences and patterns are cultural. In many ways, eliminating this disability indicates that all disability is not welcomed in this culture and does not deserve the opportunity of life. Similarly, the few scientists choosing what is suitable for the many has proven to have dire consequences for not only the individuals directly involved, the diminished scientific standards. We should ask ourselves - should we regard the near-universal abortion of people with Trisomy 21 as a canary in the eugenics coal mine? Are we, as a society, showing an implicit approval of harmful selective reproduction?
Belgium
Belgium Legislature
Belgium was one of the first nations to legalize euthanasia in the medical field. The Belgium Euthanasia Act was ratified in 2002, allowing adults aged 18 and older, by request, to be euthanized. Twelve years later, in 2014, parliament in Belgium passed a bill allowing euthanasia for terminally ill children over 12 (European Journal of Health Law). Belgium became one of the first nations to legalize euthanasia for all, requiring solely the consultation of one psychiatrist and the consent of two doctors. Mark S. Komrad, MD, studied the practice of legalizing euthanasia in Belgium, noting the procedures after a patient requests euthanasia.
In 2002 Belgium legalized euthanasia by physician (typically by injection) at the request of patients, and removed any distinctions between terminal versus nonterminal illness, and physical versus psychological suffering. As long as the condition is deemed "untreatable" and "insufferable," a psychiatric patient can be potentially eligible for euthanasia. There is a consultative process that basically needs a minimum of two doctors to agree about the patient's eligibility. Also, the patient gets to weigh in on whether their condition is "treatable." Since the patient has the option to refuse treatments, this refusal may create an "untreatable" situation (Komrad).
The significance of the vagueness of this law, as well as the potential language, tone, and experience, can create tension between the values of the extremities of euthanasia as it differs from practices such as Physician-assisted suicide, in legal and moral circumstance (Verhofstadt).
Belgian Controversy
Such legalization is controversial because the practice was not only priorly deemed unethical but immoral due to the reasons and history behind its use. In Belgium, it is legal to euthanize a citizen with a mental health issue or psychiatric disorder, even children. In looking at Belgium's legality, one notices the dilemma in a system that is single-handedly putting to death the most vulnerable people in society: those seeking suicide. Belgium is a society that is explicitly allowing health care professionals to legally and purposefully end the lives of some of the most vulnerable people in society. Is a diminished life a life that is no longer valued? What does it mean to have a diminished life? Who gets to decide?
Results and Patterns
This law empowers citizens in critical health crises to defy the idea of what a legitimate value of life would be. This autonomous act appears virtuous through its empowerment of the vulnerable to eliminate their suffering. However, when the number of citizens legally dying has increased so strikingly, it crosses the line from individual autonomy to coercive regularity. The European Institute of Bioethics reported that assisted deaths increased by 12.6% in 2019, with 2565 Belgian citizens euthanized (du Bus). The number of citizens choosing to die by euthanasia has exponentially increased in the last fifteen years. To add, as the number of people requesting euthanasia increases, the amount of time and care that can physically be allocated to each patient decreases. This means that the Belgian society is vulnerable to desensitization and an easier death for the most vulnerable members of Belgian communities. This increase shows bigger moral pictures of life and death, developing the patterns of who desires the "right" to die rather than who "should'' die. In addition, the actual consultation period has decreased heavily (Belgian Commission Fédérale de Contrôle et d'Évaluation de l'Euthanasie). The frightening correlation between the number of citizens dying by euthanasia and the different consultation times is a crucial consideration; however, this correlation does not equal causation. When a system allows a patient to receive immediate legal death, it reflects how their life is valued.
Connection to the Past
To end a life so suddenly reflects a society's interest in removing the life in the first place. There are reasons why someone could want to end a life. Whether these reasons be that this person is a danger to society and needs to be removed, or if they are an innocent person that wants to end their suffering. It is impossible to set a precedent for such a subjective task and responsibility of reasoning for ending a life.
One could consider that it is immoral to bring a person into the world if they suffer so much. However, this benevolent reasoning ends the same as a maleficent reason, such as the desire to fall back into eugenics patterns. There are explicit versus implicit biases, yet when they produce the same result, it poses a danger.
There is a need for inclusion, and the fact that these patterns have developed for years could reflect that society does not care about those vulnerable. Belgian legal procedure for euthanasia assessment requires the consultation of at least one psychiatrist for this specific patient group and research outside of Belgium.
However, psychiatrists themselves are uncomfortable with the idea of administering euthanasia, although the medical field in Belgium has not added comments or considerations. In fact, a majority of physicians administering euthanasia are not experts in the field or psychiatrists. Instead, they are other medical workers specializing in other fields.
Discomfort with euthanasia has not always been the case, however. In Nazi Germany, all ethics were swept away by the strong, antisemitic genocide of the Holocaust, as psychiatrists participated with dedication and relish in the program to exterminate the mentally ill and other lives that lacked value (Hohendorf). That word, eugenics, today evokes images that are specific and heinous: forced sterilization of the "feebleminded" in early-20th-century America, which in turn inspired the racial regime of the Nazis, who gassed or otherwise killed tens of thousands of people with disabilities, many of them children (Mohdin; United States Holocaust Memorial Museum 3-5, 9). However, eugenics was once a mainstream scientific pursuit, and eugenicists believed they were bettering humanity. With history to remember, this is a fair sign of the danger. It is frankly frightening to see the same patterns develop in the legality of this bill.
Coercive Regularity
One might see allowing people with disabilities to request euthanasia as virtuous - empowering individual vulnerable people to choose how they die. However, as with abortion after prenatal testing, we need to look at the total of individual decisions as a society. When the number of people with illnesses and disabilities who choose euthanasia goes up dramatically, we need to wonder if we are not merely seeing the exercise of a lot of autonomy but whether we are starting to see evidence of coercion. Social norms are coercive. An example of a social norm is the expectation to brush one's teeth twice a day, which one could argue is an individual decision; this is due to the way that no one would know if you violated the norm. However, once you have revealed that you broke the social norm, you are perceived as unhygienic. Hence, in a society built on social norms, there are consequences to violating norms. Suppose one lives in a society where disability is not wanted, whether implicitly or explicitly, they may face negative responses. These responses or negative results can range from lack of resources to judgment from others in the community. The perception of one's decision to go through ending a life could shift from being individual to being influenced by society; the idea that if one administers bad feedback on something one does, it signifies that that idea or work is bad. There is also immense pressure of being the odd one out. The social, financial, and mental pressure and toll it could take on a mother of the only Danish child with Trisomy 21 in a 25-mile radius.
What are the lengths of such a moral toll it could take for one to see someone struggling with the same mental health issues they struggle with be legally put to death?
Reflections Brought by the Law
Belgium's legal system allows healthcare professionals to end the lives of some of the most vulnerable people in society. This Belgian law reveals the dilemma of a system that is single-handedly putting to death the most vulnerable people in society; those seeking suicide. What does the legalization of euthanasia in Belgium say about social attitudes concerning the value of the lives of people with disabilities? Could this social attitude be compared to the social attitudes of eugenics? Could one note similar patterns? This Belgian law empowers citizens in critical health crises to defy the idea of what a legitimate value of life would be. Yet, who decides the legitimacy?
Many are outraged over this law and the notion of legalized euthanasia in it of itself. Leading the masses of frustration is an organization named Not Dead Yet. Not Dead Yet is a group with the purpose of opposing Physician-assisted suicide, declaring themselves "a national, grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination against old, ill, and disabled people . . . [that] helps organize and articulate opposition to these practices based on secular social justice arguments (Not Dead Yet).
Ethical Considerations
Significance of Ideology in Bioethics
It is naive to conceptualize conflicts of disability justice and mental health justice on only a person-by-person basis. Disability rights have a robust and secure place in the field of bioethics and have such similar values and methods of solving situations that it is foolish to exclude them from bioethics issues.
"I maintain that it is a mistake to think of this conflict as arising just from a difference in ideology or political commitments because it represents a much deeper difference—one rooted in variations in how human beings perceive and reason about moral problems… The lived experiences of disability produce variations in moral psychology that are at the heart of the moral conflict between the disability movement and mainstream bioethics" (Stramondo 22).
As Stramondo notes, it is essential to consider not just the ethical values behind the action but its impact and how it represents a culture.
Representation of Society
The value of life represents the ideal society, who belongs and who deserves to belong—the idea of deserving to belong in a culture ties back once again to the concept of eugenics. The results of choosing the perfect life are reflective of demonstrating the idea and approach of selectively breeding and reproducing solely desirable traits to improve future generations. As Hamlet professes in his soliloquy,
“to be or not to be? That is the question. Whether ’tis nobler in the mind to suffer / The slings and arrows of outrageous fortune, / Or to take arms against a sea of troubles, / And by opposing end them? To die: to sleep” (Shakespeare Act 3 Scene 1).
Do these people deserve to be on this earth? What is the impact of a society legalizing the death of one of its community members, thereby noting their lack of worth?
Comparisons of Birth and Life
The process of selecting what is desirable is reflected in the patterns of birth and life. Life and death are analyzed in a circular, eventual, inevitable cycle; these two concepts are reflective of each other. Such reflection ties together the two cases, choosing who deserves to live through the results of Denmark's advancements and who deserves to die through the results of Belgium's advancements. Furthermore, these systems and practices in and of themselves have the potential to determine which type of people deserve to live and die. With such a big idea, one can turn to esteemed philosophers to understand the principles of human nature and what to an individual, and to the community, means to have a high value of life.
Autonomy
The competing values of the individual versus the community or autonomy versus conformity are typically the subject of debate in the field of bioethics, and it is necessary to point out how they may conflict. As previously mentioned, while autonomous decisions are private and individual, when patterns develop, it reflects something bigger. The value of autonomy is tricky because it has the potential to be coerced.
Scope of Bioethics
In discussing the value of life in other bioethics dilemmas, the question of humanity is posed. How could we take a life from someone that did not give their consent, voice their opinion, or make changes in the world? The fact that it is unethical to experiment on or kill human beings who lack "desired?" attributes and the lack of those attributes alone cannot be what justifies experimentation or abortion—especially in the cases regarding euthanasia and Down syndrome. Lacking the capacity to have moral claims made on them, individual life and purpose, excludes not only individuals with radical cognitive impairments but infants and young children as well (Wasserman et al.; Kain). Now, this begs a larger question of the legalization of euthanasia in Belgium for children and prenatal screenings of fetuses for Down syndrome in Denmark. Have we ignored the canaries in the coal mine? Were the patterns too discrete? What is the value of life now after these technologies that determine when life begins and ends are implemented? These results prove that types of life have the potential to be extinct. Is that life now subject to being devalued? There are altruistic and virtuous reasons to provide reasoning for wiping out these lives; as previously stated, there are multiple levels of nuance to an individual's decision. Nevertheless, with such a societal shift, one should consider if this is a reflection of desensitization.
What it Means to be Disabled
The perspective of society and the intent for potential discrimination cannot always be classified as individually immoral. It is, however, intrinsic to the human experience to associate and classify in a hierarchal method. However, this is an unjust practice. Stephen Mulhall notes the significance of the human experience as a whole in the section "Mapping our moral horizons" in his work Analytic Philosophy.
"We do not strive (when we do strive) to treat human infants and children, the senile and the severely disabled as fully human because we mistakenly attribute capacities to them that they lack, or because we are blind to the merely biological significance of a species boundary. We do it (when we do) because they are fellow human beings, embodied creatures who will come to share, or have already shared, in our common life, or whose inability to do so is a result of the shocks and ills to which all human flesh and blood is heir—because there but for the grace of God go I" (Mulhall 7; Wasserman et al.).
Those that are disabled face the discrimination of feeling valued by their lack of abilities, as humans adapt to associating by function. However, nothing about one's morality or humanity is associated with one's abilities.
Explicit and Implicit Progress
The way disability is valued in society, and the notion of how society treats selective breeding is a trait that has ironically and paradoxically become more and more polarized even while simultaneously being swept further and further under the rug. Society’s views on disability and willingness to allow selective reproduction are increasingly visible but infrequently discussed. The taboo nature and unwillingness to act on such large measures of potential harm represent how there is a structure of a society "talking the talk" without "walking the walk."
How to Allow for Better Judgement with Respect to Disability
A communal moral shift from the heavy judgments that accompany wanting or not wanting to bring a child with a disability into the world begins with differences in individual moral psychology. As previously mentioned, and as Frank Stephens so proudly mentioned in his testimony, no one knows more about life with Down syndrome as he does (00:29-00:35). The significance of the lived experience of disability is explicitly the purpose and message of Paul K. Longmore's publication, "The Second Phase: From disability rights to Disability Culture." The lived experiences of disability cause this change before any expression of an alternative ideology.
Some people with disabilities have been affirming the validity of values drawn from their own experience. Those values are markedly different from, and even opposed to, non-disabled majority values. They declare that they prize not self-sufficiency but self-determination, not independence but interdependence, not functional separateness but personal connection, not physical autonomy but human community (Longmore).
Interpersonal relations have the potential to determine the value of life. The purpose of genuinely noting the given philosophical equality of being alive denounces ideas of prejudice. Having a disability, by the value of virtue ethics and Kantian ethics, does not mean anything different about personhood in terms of going through life. Relations with other humans allow for connections that can emphasize the acknowledgment of differences yet representation to build more substantial resources. As Lilly Fanelle, a high school junior at Kent Place School in New Jersey, stated in a Disability Education Alliance Panel, "disability lives in the context of your environment" and "accessibility isn't an extra step, it's steps that you missed" (Fanelle). Moreover, accommodations to suit disability do not represent extra steps and protocol to be added at the end, but instead are steps that were forgotten, ignored, or rejected. To clarify, Kantian ethics supports the claim that society ought to be structured to accommodate disabilities. A truly just society would consider disabilities from the beginning of its organization. However, societies worldwide, including Denmark and America, do not do this, reflecting how society could not consider disabilities as necessary to the workings of society. Kantian ethics, however, declares that disabled people are owed accommodations. Our society views accommodations for disabilities as supererogatory, going beyond what is morally required. As patterns reflect, it demonstrates that society sees accommodations as supererogatory; seemingly going beyond what was morally required. Contrasting with Kantian philosophy, when a society allows for accommodations and accessibility, whether it be through resources or acceptance, to fall through the cracks, it represents the lack of value for disability in the first place and shows that they were not deserving of high moral regard; therefore denouncing their value of life in a grand scope.
Benefit of Disability
Disability advocates and the field of disability rights interact with bioethics in multidisciplinary ways. Hence, the experience and lives of the disabled groups worldwide have the potential to advance bioethics dilemmas, "including health care rationing, growth-attenuation interventions, assisted reproduction technology, human enhancement… and euthanasia" (Stramondo 22). There is heavy significance in discussing the correlation, as the topics of advancements in life and death represent the value of a life saved and lives lost. Kantian ethics shows that the prevention of birth makes the value of life smaller/worse. However, it is worthwhile to consider whether life in a society is merely weighed by its benefits to the betterment of society. Why does disability need to have elaborate benefits in order to "keep them" or "allow them" in society?
Significance of Birth and Death
In the lens of Kantian ethics, all people have a given value of life and given moral claims and purpose in their life from the moment of birth.
"[T]he mere fact that a being is 'of human born' provides a strong reason for according it the same status as other humans. This has sometimes been characterized as prejudice, called speciesism. But it is not prejudice to hold that our own relation to these beings gives us reason to accept the requirement that our actions be justifiable to them. This position grounds full moral status in the kinship of all human beings—what used to be called "the family of man." Although this kinship currently depends on birth to a human mother, it is shared by all human beings and does not vary with degree of consanguinity." (Wasserman et al.)
Moreover, one is valued by the fact that they are born. Likewise, when one sees patterns developing of humans ceasing to be born and legally dying, their value is threatened. The two global topics' marginalized groups lose a part of their moral value due to these patterns. The fact that life is removed from both the disabled in Denmark and the physically or mentally ill in Belgium represents the devaluing of life. One more, while it is an autonomous decision in both scenarios to remove the life, it is essential to consider why the sum of all of the decisions boils down to a result that declares a devaluing of life.
Clarification of Moral Claims
Perhaps the value of life can be determined by a symmetrical system, one who receives love can give out love. One has the capacity to have moral claims made about them, individual life, and purpose (Talbert). However, this excludes not only individuals with radical cognitive impairments but infants and young children. When someone does not have this capacity, legal systems assign trustees or guardians to represent the "best interests" of individuals too immature or impaired to make, or to have made, their judgments. However, it is not clear how someone gets "appointed" as a trustee to secure moral status. Who is deserving of this responsibility? As mentioned, turning responsibility back to the experience of those disabled is essential, allowing a shift in moral psychology. Moreover, even those closest and most committed to an individual with radical cognitive impairments may find it hard to discern his interests and distinguish them from their own "judgment-sensitive" attitudes."
Implicit Biases
The education of the physicians that physically hold lives in their hands plays a prominent role, does their language swing a patient's opinion one way or another. Could a person with some of the highest brain capacity in the world and one of the highest paying jobs in the world, a doctor, value a life that may never have the capacity to reach the same level? To expand, the American policy that citizens on disability cannot have more than two thousand dollars in their assets and cannot earn more than seven hundred dollars per month, not only socially disadvantaging them but also economically providing a disadvantage (Ellis). Bias even presents itself in physical creations. For example, in one of the biggest cities in the world, New York City, in which only ¼ of the subways, primary modes of transportation for residents, tourists, and commuters, have accessible ramps. Winston-Salem in North Carolina has less than forty accessible bus routes (Kimmelman; Greenberg). Acknowledging privilege and identity to eliminate bias is vital to keep unconscious biases from manifesting as coerciveness and discrimination.
Connection to Chosen Global Issues
We have seen a near extinction of a nonterminal, statistically joyous group of people in Denmark. We have seen the euthanasia rates increase heavily coincidentally as the restrictions have been tiered to those vulnerable. These cases are trials of humanity. Are we going to fall victim to a system that is deemed to destroy us? Has the system been created in order to destroy us? Are we doomed? It is evident that we have crossed what we historically thought were moral scientific barriers. Prenatal testing was unthinkable, euthanasia was unthinkable. Have we approached or even crossed this line of "unthinkability"? Have we reached a defining societal moment? As mentioned, eugenics potentially went away in explicit practice, yet it is replicated in implicit practices. These systems bestow the tools to end the lives of the vulnerable. Might it be biased on the question of whose lives have value? (Kaufmann et al. 260). Do these patterns represent a culture? Is it an indicator of culture? What can we do now?
Conclusion
Significance of Cases
These cases of prenatal screening and euthanasia are tests of humanity. What will society do with this information? What should society do with this information? A societal mindset is due to come about due to this information. The weight of these cases as they reflect on society alludes to a great danger that is to come. However, the question at hand is: When does one know exactly what leads to the creation of a canary in the coal mine? The slippery slope nature and the amount of discrimination already lying under the surface of these results conclude in vague precedents to determine when and where the danger lies. Does the pursuit of advancing destine a repeat history and reflections of internal and cultural biases? We must ask ourselves why we are even engaging.
Reflecting on the Past with the Potential in the Future
A common phrase in the bioethics classroom is "no one knows the future." While no one can know the nuances and specificities of the future, the past can be an indicator of what is to come. As bioethicists, we are responsible for acknowledging the patterns of history and culture when we consider the pros and cons of modern medical advancements. However, it can be argued that all citizens are responsible for being informed and speaking up as they feel that advancements pose a danger to our society. With the theoretical versus historical structure, it could be valuable to juxtapose the idea of a society that has gone too far in its potential for disaster with the actual advancements that have created immense harm. The reflection on the past and the threat of repeating history is an idea that bears repeating.
Were these practices, in their establishment, ever considered part of a eugenics movement?
If not in development, it must be a reflection of culture and bears the education and motivation of shifting policy of such practices that have the potential to reflect such dark times in the past. One should consider if these dark times are already shown in the present day. Bioethicists from the writings on the ethicality of Denmark's and Belgium's practices weigh the practices of autonomy and the emergence of direct sterilization or extermination of a race of people with the results of measures that reflect these ideas implicitly. Hence, the idea of a repeat of history is increasingly necessary to keep in mind. The idea of a growing implicit bias is reflective of the idea that one can put frogs in the water and, if consistently increasing the temperature of the water, the frog will not know that the water is boiling until it is boiled to death; such a demonstration represents the struggle of defining dangerous practices and their results.
Importance of Following Philosophies in Bioethics Practices
With the lens of disability and Kantian philosophy, as well as the overview of what it means to be living, better conditions for better ethical practices come more naturally. Some may argue that such a philosophy ignores the reason of argument, removing the significance of the individual actor. However, the philosophy is significant due to its overall classification of the value of all life and setting a precedent for society. It promotes equity and justice, and through acknowledgment and the limitation of coercion and promotion of equal opportunity, equitable distribution of resources, and education, there can be progressive change.
"By remodeling mainstream bioethics conceptually, socially, and materially, we will open up the possibility of the full participation of disabled people, thus reducing the conflict and improving the quality of bioethical thought with heretofore marginalized moral knowledge" (Stramondo 24).
These cases need to be reworked in terms of moral philosophy, through the acknowledgment of privilege, and the optimism for change develops into preventing unhealthy, harmful patterns.
Systemic Solution
The fallacy of perfection is rooted in public and personal perception, stemming from misinformation, desires to conquer, and discrimination. The basis of growth stems from education and acceptance. If there is a change to be made, it is vital not only to eliminate what it means to be a person of perfection but to eliminate how to act with perfection, in a system, for example.
"How then is perfection to be sought? Wherein lies our hope? In education, and in nothing else" (Kant).
Systems do not respond to immediate, radical change. Change comes with grace. It needs to be precise and calculated. Such calculations are through lived experience and representation of those vulnerable and through the acknowledgment of patterns to avoid a repeat of history, a taste of modern-day eugenics. We are destroyed when we repeat history, and when patterns represent such similarities of the present day to the past, it is foolish to ignore, and it is imperative to have some scale of a reaction. We are responsible for responding when danger is posed; when the canary meets its end.
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