Gene therapy represents one of, if not the single most, profound turning point in modern medicine and biotechnology. Gene therapy offers either a repair or replacement of mutant genes at their biological source, and the potential to cure diseases that were once deemed untreatable including conditions including cystic fibrosis, sickle cell anemia, and spinal atrophy.
For many, this advancement embodies a fundamental change in the culmination of decades of biomedical progression. Yet, alongside this promise of hope, there is an ethical imperative that we ensure that the power of gene therapy does not become the privilege of a select few. Although the same technologies that gene therapy shows promise in eradicating certain types of genetic disease, it also poses the risk of reshaping the social and moral norms of healthcare.
As gene therapies gradually move from experimental trials to practice, who benefits and who is left behind?
Can Cures Collapse Communities?
One of the more paradoxical consequences of a successful gene therapy is the disruption of existing health care infrastructures. Take cystic fibrosis for example. Beyond the clinical setting, patients are supported by entire community networks such as the Cystic Fibrosis Foundation–accredited Care Centers, the CF Patient Registry, and online and regional peer networks. This support system not only is evovled to provide treatment and support for patients living with that disease, but they create identity, belonging, and shared expertise among people who understand the lived experience of that disease. Scholars in disability ethics warn that the disappearance of certain conditions through genetic intervention can inadvertently silence the communities that have built meaning and solidarity around them. At the same time, there is a risk that society may begin to view disabilities or genetic differences solely as problems to eliminate rather than aspects of human diversity.
When a cure becomes the default or expectation, people who continue to live with disability may face increased stigma. This reinforces ableism by framing certain bodies as inherently undesirable, not because of their lived experience, but because of a path formed toward conformity through technology.
This fear deserves fair consideration, but it also uncovers an uncomfortable truth: many medical and institutional systems economically depend on people remaining sick. Cystic fibrosis clinics represent decades of intentionally compassionate work, but also billions in sustained revenue from chronic care and pharmaceuticals. To mourn the loss of such an infrastructure would romanticize a status-quo that benefits solely from illness. Critics often frame the debate around risk, or the fear of eugenics, but it is an ethical responsibility to use our technology to alleviate preventable suffering. Alison Kafer, a disability ethics scholar, argues that medical institutions can feign the facade of care, but this is actually a form of captivity in which healthcare systems seek to limit disabled people’s autonomy. Gene therapy liberates patients from this captivity. It shifts healthcare from a model of perpetual treatment to one of resolution. The collapse of a clinic is not a tragedy if what replaces it is, in fact, health.
Accessibility as a Moral Frontier
Still, liberation through cure is meaningless if only a few wealthy people can afford it. Some therapies such as Zolgensma, which is used to treat spinal muscle atrophy, can be priced at over $2 million per dose. The risk of genetic privilege looms over the majority of individuals in the world.
In some wealthy nations, gene therapy might become a day-to-day routine while in others, it might remain a dream. In this framework, there must be an insistence that the solution to such inequality is not restraint and inhibition of progression, but rather structural redesign. Governments and research institutions must treat gene therapy as a public good to work towards to become accessible to everybody. Bioethicists Madison Powers and Ruth Faden note in their 2006 study that true justice lies in an equitable distribution of both the benefits and the burdens of medical progressions. Thus, gene therapy should not become a privilege of the wealthy, and it even serves as a test to our societal collective and a stepping stone to universal care.
The Eugenics Debate
Rightfully so, fears of gene therapy becoming “new eugenics” dominate such discussions. This caution is particularly resonant at the University of Virginia, which once played a direct and specific role in advancing eugenic thought and policy. In the early 20th century, UVa physicians contributed to the Virginia Sterilization Act of 1924; this legislation authored the sterilization of thousands that were deemed “unfit” (namely, black- and brown-bodied persons) without their consent. This policy, which used reasons such as public health and genetic improvement as justification, serves as a reminder of how science can be co-opted to serve bigotry. Writing from this institution demands the acknowledgment of this history, as well as a reckoning that gene therapy must be guided by humility.
Yet, equating curative technology with eugenic ideology oversimplifies the moral landscape of what purpose this may hold. Historical eugenics sought to control populations through discrimination. Gene therapy, in contrast, operated on the principle of healing, eliminating chronic diseases that limit quality of life. This distinction is practical. The goal is not to engineer something different from the natural, but to restore agency and healthiness in an individual. Conflating curing a disease such as cystic fibrosis with selecting for height and hair color or intelligence misrepresents both the intent, and also its impact on society.
Nevertheless, this line can still easily blur. Thus, regulation must focus on delineating such boundaries. Therapy over enhancement, and healing over preference.
Our Duty for Future Lives
Current technologies and therapies consist of targeting somatic cells. Gene therapy, on the other hand, comprises germline editing which will alter the genes for our future generations. Some ethicists argue that this type of therapy is violating consent and agency of our descendants, since they cannot agree to inherited gene modifications made on their behalf, but they still live with the consequences, whether they are good or bad.
Though, it could be argued that failing to correct a genetic disorder when the resources are available could be considered negligence. The Nuffield Council on Bioethics suggests that germline editing can be considered morally acceptable if it promotes the healthiness and welfare of the future person. It should be emphasized that it must be an ethical duty to spare future lives from suffering.
The story of gene therapy is no longer hypothetical, and therefore now a responsibility for society to build structures that prevent genetic privilege. Scientists must pursue cures ethically, policymakers must regulate them with transparency, and healthcare institutions must ensure access for all. Gene therapy embodies the demand for a system of justice and equity that is as sophisticated as our science.
The purpose of bioethical discourse in our society is not to fear what consequences could potentially rise due to our progression, but to encourage progression in the right direction – a direction of gene therapy expanding freedom rather than narrowing it and a direction of eliminating suffering without eliminating diversity. If gene therapy is guided by justice rather than by profit, fear, or eugenic ideology, then the future of biotechnology can certainly be one of hope and compassion.