Gene Editing Ethics
Gene Editing Ethics
Gene editing techniques are shaped by underlying values and interests, including economic and social ones. Without careful scrutiny, ethicists warn that these techniques risk reinforcing existing hierarchies, such as assumptions about which lives are worth living and which should be “edited” out of existence. There is concern that gene editing could not only entrench current inequalities but also create new ones if only certain groups gain access to specific traits.
Language itself reflects ethical perspectives. While the word “editing” may sound harmless or even beneficial, many people who face stigma and marginalization from ableist norms view the concept differently. For them, “editing” can feel more like being erased or devalued (Benjamin, 2016). The frameworks that follow outline approaches to addressing questions about germline gene editing and disability, with a particular focus on intellectual disability.
For centuries, under the medical model, disability was regarded as a defect or illness that needed to be eliminated or mitigated. This perspective often led to avoidance, segregation, and pity directed toward people with disabilities. By contrast, disability rights advocates now advance the social model of disability, which frames disability not as an inherent flaw but as a result of society’s failure to accept and accommodate difference.
According to the social model, disability is not a medical problem requiring correction, but a social issue rooted in inaccessible environments and exclusionary practices. If society redefined its views, ensured accessibility, and created systems of inclusion, disability would be understood as another way of living rather than a condition to be “fixed.”
With this in mind, disability rights advocates raise concerns about gene editing. They warn that pursuing genetic “perfection” risks shifting blame onto people with disabilities themselves, instead of motivating society to accommodate and support them through public investment and policy.
Historically, people with disabilities have had little influence over legislation and policy decisions that directly affect their lives. Ruha Benjamin observes that while nonscientists, particularly middle-class advocates, often participate in disability justice movements, they do not necessarily represent the majority of people with disabilities. For many individuals, dismantling discriminatory policies and prejudices is more urgent than investing in “miracle cures” promised by gene editing.
Disability advocates argue that it is discrimination and structural barriers, not disability itself, that cause the greatest harm. They emphasize several shared values:
People with disabilities must speak for themselves and lead policy and research decisions.
Individuals should have control over their own bodies and make their own informed choices.
Discrimination must end, and every human life should be respected regardless of disability status.
Many advocates also call for a balanced distribution of research funding between “cures” and efforts to improve quality of life. In the autistic community, many self-advocates explicitly reject cure- or prevention-focused approaches, viewing them as inappropriate paradigms.
The disability rights movement maintains that society is not improved by erasing disabled people. Instead, progress lies in restructuring society to embrace diversity. Disability and social justice advocates envision a world where differences in ability, race, class, sexuality, and other characteristics enrich collective life. They caution, however, that without careful oversight, genetic technologies risk eliminating people with disabilities rather than the barriers that prevent their inclusion. As Benjamin (2016) argues, people with disabilities must be “at the table and not just on the table of the life sciences.”
Establishing universal limits on gene editing is complex because it intersects with reproductive freedom. A common misconception is that passing laws alone is enough to shape science for the public good. For example, the Genetic Information Nondiscrimination Act of 2008 was an important milestone, but disability advocates argue it has not been sufficient to prevent discrimination in employment or insurance.
In addition, scientific harms evolve over time. While state-sponsored eugenics may be a thing of the past, market-driven forms of discrimination persist. Consumer demand for “desirable” traits risks amplifying biases, even without direct state involvement. In other words, the absence of state-sponsored eugenics does not mean bias and discrimination are gone; they may simply manifest in different ways.
Unlike other methods of reproductive genetic disease prevention, such as preconception screening, prenatal testing, or preimplantation genetic diagnosis, germline genome editing directly alters embryos. Instead of discarding embryos with unwanted traits, germline editing attempts to preserve the embryo while removing or correcting the trait. In this way, it appears to address one of the deepest ethical criticisms of other reproductive technologies: that the disabling trait is treated as more significant than the embryo’s life.
However, germline editing also differs in a crucial way. By altering germ cells, the changes are permanent and heritable, passing to future generations and reducing the prevalence of certain conditions in the human gene pool. This power carries unpredictable risks, including irreversible mutations and long-term consequences for heredity. The safety of such interventions remains unknown.
The expressivist objection, central to disability rights critiques, argues that selective reproductive practices implicitly convey that the lives of people with disabilities are less valuable. The very availability of these technologies, along with social pressures to use them, reinforces negative stereotypes about disabling conditions and the people who live with them. These messages do not only affect those directly screened for certain conditions but also influence societal perceptions of disability more broadly.
Informed consent requires that participants agree to procedures only after being fully informed of potential risks and benefits. True consent cannot involve persuasion; it must be freely given (van de Poel and Royakkers, 2011). Hypothetical consent complicates this principle, as it assumes that future individuals, such as descendants affected by germline editing, would agree under certain conditions. Yet these individuals cannot actually provide consent.
Moreover, traditional approaches to informed consent may not be adequate in areas marked by profound scientific uncertainty. Researchers can only provide partial knowledge, which calls for renewed attention to building trust and reciprocity between science and society.
With the development of CRISPR, this question has become more urgent. Historically, both national and international frameworks answered with a firm “no,” arguing that germline editing conflicts with human rights principles of freedom, equality, and dignity. Many scholars warn that allowing germline editing risks sliding toward eugenics, since it opens the possibility of designing individuals to meet societal preferences.
Once bans are lifted, it may be difficult to maintain a clear boundary between medical applications and enhancement. Critics caution that this blurring could lead to unprecedented pressures to conform to genetic “ideals.”
Germline editing involves uncertainty about long-term effects and the scope of its applications. The precautionary principle holds that protective measures should be taken even when risks are not fully proven.
A related concept is that of acceptable risk, defined as risk that can be morally justified. Factors to consider include:
The degree of informed consent involved.
Whether the benefits outweigh the risks.
The availability of safer alternatives.
Whether risks and benefits are fairly distributed.
Some scholars advocate a cautious, “go-slow” approach to gene editing, citing risks to future generations, safety concerns, equality, and public trust. Ruha Benjamin has argued that the rhetoric of urgency is rarely neutral.
Others, such as Julia Mahoney and Gil Siegal, argue for a more rapid approach. In Beyond Nature? Genomic Modification and the Future of Humanity (2018), they claim that the strongest arguments for extreme caution instead point toward deliberate progress. They warn that restricting germline modification may drive research underground, decreasing transparency and accountability. They also reject the idea that germline editing represents a new form of eugenics, framing it instead as a way to expand individual choice.
Mahoney and Siegal highlight the dangers of “genomic moonshining,” in which scientists conduct clandestine experiments outside the oversight of established ethical and legal bodies. They compare it to illicit alcohol production: the harm lies not in the alcohol itself, but in the unsafe and unregulated methods used to produce it. Similarly, they argue, unregulated gene editing conducted in secret poses far greater risks than transparent, accountable research.
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