Will I remove my disability from my child?
One day, I will have to decide whether or not to have a child. As someone with Multiple Hereditary Exostoses (MHE), a genetic disorder, I know there is a 50% chance that my child could inherit this condition. If I roll the dice and they get it, they will be facing a lifetime of pain, surgeries, and the feeling of never quite fitting in. Moreover, the focus is not on how this decision affects the parent but on how it will impact the child's life and well-being.
The thought of having children has always been a profoundly conflicting one. With a 50% chance of passing on a chronic condition, a future child could face a life of pain, missed school days, and the emotional burden of feeling different. This experience is not unfamiliar. Childhood memories of hospital trips were filled with excitement, viewing surgeries as adventures without understanding the long-term physical and psychological impact. Is it fair to subject a child to that same reality?
On the other hand, another possibility is the option to "remove" the disability. Genetic testing could reveal whether a child would inherit the condition, and technologies like gene editing or preimplantation genetic diagnosis (PGD) could prevent it. However, choosing to "fix" a child feels overwhelming. Altering genetic makeup raises ethical questions about playing God and determining what a child should or should not experience. Does anyone truly have the right to make that decision on behalf of another?
Right now, I am leaning toward adoption. I do not want to be the one deciding whether or not to give my child a life with my disorder or to "erase" part of who they might be. It feels too big, too loaded with ethical implications. So, in this paper, I am asking: What are the ethical implications and societal consequences of allowing parents to select against genetic disabilities in their children, especially when the disability is identified through genetic testing, and the option to “remove" the disability through reproductive technologies like gene editing or PGD is available?
First and foremost, this answer will be different for everyone. Every individual's sense of reproductive autonomy is shaped by their experiences, values, and the context in which they live. What one person perceives as "unethical" may be another's decision. While choices may not align with everyone's beliefs, respecting each individual's right to make those choices is essential.
This distinction underscores the importance of recognizing that reproductive autonomy is not a one-size-fits-all concept, as personal values, experiences, and circumstances shape it. The notion that one's autonomy is tied to one's ability to decide about one's body is central to bioethics. However, applying this concept often intersects with complex moral, social, and cultural considerations.
In this essay, I will discuss these dilemmas, drawing on ethical frameworks from bioethics and disability rights and using sources that engage with these complex issues. What is ethical or unethical might not align with the views of others, but this is the essence of reproductive autonomy: the right to make one's own decisions regarding reproduction. While I will bring my perspective to the issue, the focus here is on exploring the broader ethical implications of these decisions and how they affect individuals and society.
Upon discussion, I noticed something thought-provoking about how different people view genetic disabilities. Many individuals with disabilities believe they would not want to remove that aspect from their child's life. For them, this is not just about the condition itself but about valuing the identity and experiences that come with it. They feel that embracing diversity, including disabilities, enriches our understanding of what it means to be human.
In contrast, those who do not have disabilities often wish to eliminate these genetic conditions, driven by a desire to protect their children from the hardships and pain that can arise from them—giving them a "better quality of life." This difference in perspective shines a light on the complex relationship between personal experiences, identity, and how we perceive suffering. It is a crucial conversation that raises important questions about acceptance and the meaning of a fulfilling life.
As we contemplate these reproductive choices, we must ask ourselves important questions about what kind of future we are shaping. Will I still want to adopt? This reflection can deepen our understanding of the value of all lives, regardless of how they enter the world, and encourage a broader perspective on family and parenthood.
In discussing reproductive autonomy, it is crucial to emphasize that autonomy is not simply about the freedom to choose, but rather the freedom to choose in a manner that is informed, uncoerced, and supported by necessary resources. Reproductive autonomy is frequently viewed as the ability to make personal decisions regarding one’s body and future family. For many individuals, this includes choosing when or if to have children and utilizing technology to prevent certain genetic conditions from being inherited. However, based on my experiences and insights from Liao (2018), true autonomy is far more complex than merely having a choice.
Consider the situation of having the right to shape your future while simultaneously facing societal pressures, medical recommendations, or financial limitations. In my own circumstances, the choice extends beyond just avoiding a condition like MHE; it involves wrestling with the ethical implications of potentially altering someone’s life trajectory before they are even born. Some people regard technological advances as beneficial, viewing them as a means to alleviate suffering, whereas others express concern that they could diminish the diversity of human experiences.
Navigating this interplay between individual freedom and ethical duty is not just a theoretical discussion; it directly impacts real individuals, families, and their futures. Each decision carries the potential for hope as well as the risk of regret, emphasizing the importance of approaching these topics with thoughtful consideration.
The idea of eliminating disabilities raises difficult ethical questions. If parents have the right to select against a disability, where does that leave society? What does it mean for the value of life with a disability? Many individuals live with disabilities, facing challenges yet leading rich, full lives. Should society start choosing to eliminate disabilities, thereby devaluing lives lived with them? Advances in reproductive technology have significantly altered the discussion around genetic disorders. Today, techniques like preimplantation genetic diagnosis enable prospective parents to test embryos for genetic conditions before implantation, allowing them to avoid passing on disorders such as MHE. Additionally, gene editing technologies like CRISPR-Cas9 offer the potential to correct genetic errors at their source. At first glance, these breakthroughs seem to promise a future where genetic diseases—and the suffering that comes with them—can be greatly reduced.
As Ventura-Juncá et al. (2015) point out, the line between therapeutic treatment and enhancement is often blurred. When we begin to use these technologies not just to alleviate suffering but also to pursue a narrow definition of genetic “perfection,” we risk sending a harmful message. The belief that life with a disability should be eradicated can unintentionally perpetuate stigma against those who live with such challenges.
Picture a future where every genetic imperfection is edited out—a world where the natural diversity of human life is replaced by a single standard of “ideal” genetics. In this scenario, the differences that once enriched our culture and contributed to our shared resilience might be seen as flaws to be corrected. This potential outcome is not just a theoretical concern; it taps into historical anxieties about eugenics and the social engineering of human populations. The slippery slope from preventing disease to enhancing traits like intelligence, appearance, or athletic ability raises profound ethical questions about the implications of “designing” human life.
While the scientific promise of these technologies is undeniably thrilling, the desire to eliminate genetic differences can undermine the value we place on diversity. At what point does our pursuit of a “better” gene pool threaten the very qualities that make us human?
To answer this question, we must understand society's understanding of disability. Numerous individuals with disabilities argue that their conditions are essential to their identities and not simply obstacles to be removed. The social model of disability, championed by researchers like Roesner (2022), suggests that societal attitudes, lack of education, inadequate accessibility, and systemic biases are the true hindrances individuals face, rather than their own physical or genetic conditions.
For instance, a wheelchair user may struggle not because of their inability to walk, but because society has failed to create accessible public spaces. From this viewpoint, the challenges associated with a condition like MHE can be worsened by a lack of social support. When genetic selection is employed to eliminate conditions like MHE, we risk reinforcing the notion that lives with disabilities are inherently inferior.
Johnston and Zacharias (2017) warn that endorsing genetic selection could establish a hierarchy where only certain genetic traits are seen as desirable. This might alienate individuals who do not fit the perceived “ideal” genetic characteristics and could foster intolerance toward human diversity. Thus, the conversation extends beyond simply alleviating suffering; it also emphasizes recognizing the inherent value of every human life, including those who do not conform to arbitrary standards of genetic “normalcy.”
For individuals living with a genetic disorder and facing the possibility of passing it on to a child, this choice becomes a moral and emotional dilemma. Should a parent prevent a child from inheriting the condition, sparing them the pain and hardship endured, or allow them to experience a life with a genetic condition that has shaped identity and fostered resilience? Genetic selection has far-reaching implications that extend into both legal and societal realms. In the United States, the Genetic Information Nondiscrimination Act (GINA) was created to protect individuals from discrimination based on their genetic information. However, as genetic testing and gene editing become more prevalent, there is an urgent need to reevaluate and update these legal protections.
One major concern is that employers or insurance companies may start to favor individuals with "ideal" genetic profiles. This could pave the way for new forms of discrimination, resulting in asociety where genetic traits are directly linked to social and economic worth. Such a shift would have profound consequences; if a person's value is determined by their genetic makeup, we could see a radical reorganization of social hierarchies, potentially worsening existing inequalities.
The psychological impact of genetic selection also deserves serious consideration. Parents who choose genetic selection may carry a heavy burden of responsibility. The emotional burden extends to fears of making the "wrong" choice—exposing a child to suffering or denying them a chance to live with a disability. Parents who opt for genetic technologies may feel conflicted about whether they are acting in the child’s best interest or undermining their unique identity.
Meanwhile, children born as a result of these interventions may confront complex questions about their own identities: “Am I loved for who I truly am, or merely for the genetic traits that were chosen for me?” Johnston and Zacharias (2017) explore potential psychological effects, such as feelings of being a product of design rather than a "natural" child. The psychological impact could be pronounced if aspects of genetic makeup were intentionally selected, possibly leading to feelings of inadequacy or that their identity is molded by external expectations
The idea that a child might not be conceived "naturally" raises crucial ethical questions about their autonomy. If parents can select embryos based on desired traits, the child may feel that their identity is molded by external expectations. This raises concerns about their freedom to define who they are—whether they are truly themselves or simply a version created to meet someone else's ideals.
The potential for social discrimination is particularly relevant regarding genetic disabilities. If children born from genetic selection are raised to consider themselves part of an elite group, it could create a divide between the "chosen" and those who were not. The implications ofprocreative liberty reach into society at large. Normalizing genetic selection risks linking human worth to genetic makeup instead of personal qualities and achievements, creating a moral obligation to regulate reproductive technologies while valuing diversity.
When I contemplate starting a family, I find myself at a crossroads with two distinct paths before me. On one side is the option of pregnancy accompanied by extensive genetic testing. This choice equips prospective parents with crucial insights into the likelihood of their child inheriting a genetic disorder, such as MHE. While this awareness can prepare parents for potential challenges or even help them avoid certain difficulties, it also brings about significant pressure. Once pregnancy begins and genetic screening becomes accessible, the decision-making process can be heavily influenced by this knowledge, often leading to a sense of duty to act on the findings. The ability to pinpoint a disability can amplify both societal and personal expectations, pushing parents toward choices like termination or other interventions, thereby reinforcing the notion that disability should be eliminated.
On the other hand, adoption offers a route that eliminates these pressures. Opting for adoption means welcoming a child without the complications that arise from prenatal test results. This path liberates prospective parents from the intricate moral dilemmas tied to “correcting” a genetic trait and challenges the prevailing belief that disability should be avoided at all costs. It reflects a dedication to embracing the unknown without the overwhelming influence of genetic testing results during pregnancy.
As we look ahead, it's important to reevaluate the limited ideas of what we consider "normal" or "ideal." A society that places an excessive emphasis on genetic perfection risks losing the invaluable benefits of human diversity. Instead, our focus should be on cultivating inclusive and supportive communities that recognize and celebrate the unique contributions of each individual. This vision requires a significant cultural transformation. It means reexamining our views on disability and embracing the idea that our differences can serve as strengths rather than weaknesses.
In this envisioned future, reproductive technologies would aim to enhance human well-being while respecting our differences, rather than conforming to a singular ideal of perfection. Parents would be empowered to make informed choices, backed by strong legal protections and social policies that champion equity and justice. Society would increasingly recognize that every life, irrespective of how it is conceived or genetically expressed, adds to the rich tapestry of our collective human experience.
The issue of whether to use reproductive technologies to prevent the transmission of genetic conditions like MHE is complex and deeply personal. On one hand, the idea of protecting a child from the physical and emotional challenges associated with a genetic disorder is certainly appealing. On the other hand, the broader implications of genetic selection—such as its potential to reinforce ableist attitudes, diminish human diversity, and create new forms of inequality—must not be overlooked.
As I stand at this pivotal moment, I remain committed to the belief that our choices, whether made in the privacy of our own lives or reflected in public policy, should be guided by a commitment to inclusivity and respect for human diversity. My journey with MHE has taught me that our challenges can coexist with our strengths and that each individual’s experience has intrinsic value. Ultimately, the decision to use genetic technologies, adopt, or pursue other alternatives must be approached with an eye toward both personal well-being and collective responsibility. By carefully balancing the promise of technology with ethical considerations, we can help shape a future where every human life is valued—not for its conformity to a genetic ideal, but for the unique story it has to tell.
By embracing this vision, we commit ourselves not only to advancing science but also to fostering a compassionate society that celebrates diversity in every form.
References
Johnston, J., & Zacharias, R. L. (2017). The Future of Reproductive Autonomy. Hastings Center Report, 47(S3)10.1002/hast.789
Liao, S. M. (2018). Designing humans: A human rights approach. Bioethics, 33(1), 98. 10.1111/bioe.12519
Roesner, N. (a). Genetics at the Intersection of Reproductive Justice and Disability Rights: Rhetoric and Practice
Ventura-Juncá, P., Irarrázaval, I., Rolle, A. J., Gutiérrez, J. I., Moreno, R. D., & Santos, M. J. (2015). In vitro fertilization (IVF) in mammals: epigenetic and developmental alterations. Scientific and bioethical implications for IVF in humans. Biological Research, 48(1)10.1186/s40659-015-0059-y
