One writer recalls being born in 1981 and diagnosed with spinal muscular atrophy (SMA) at the age of three, a hereditary and progressive condition that weakened their muscles and eventually limited mobility. Growing up, they imagined a version of themselves without the condition — not a fundamentally different person but a twin-like self relieved of a single deficit — and frequently thought about what life might have been like had SMA been absent.
That private yearning illustrates a broader cultural shift. After decades in which the very idea of eugenics was widely discredited because of its association with coercive, state-led programmes of elimination and discrimination, a new form of reproductive decision-making is emerging. Often labelled "liberal eugenics," this model is driven by individual consumer choice and commercial services: pre-conception screening, in vitro fertilisation with embryo selection, and the prospect of gene modification for disease prevention or trait enhancement.
Proponents argue these technologies expand reproductive autonomy and can spare families the burden of serious inherited conditions. Clinics and companies present screening and selection as an extension of existing medical care — a way to reduce suffering by identifying embryos at high risk of debilitating disease or to favour embryos without certain genetic markers. For many prospective parents the promise is simple and urgent: the chance to avoid the pain and uncertainty of genetic illness.
But critics say the commercialisation of selection reproduces the very dangers that made eugenics abhorrent. Disability advocates warn that widespread preference for embryos without particular traits could stigmatise or erase people who live with those conditions, shifting social norms about which lives are considered worth living. Ethicists point to slippery slopes: once selection to avoid disease is normalized, market pressures and social expectations could expand the practice toward cosmetic or cognitive enhancements.
There are also equity concerns. Technologies that enable genetic screening and editing are costly and unevenly available, risking a society in which the wealthy obtain genetic advantages while others cannot. That could reinforce existing inequalities and create a market for 'designer' characteristics that are accessible only to affluent parents, with implications for fairness and social cohesion.
Policymakers, scientists and advocacy groups are calling for a public debate about where to draw the lines, and for clear regulatory frameworks to govern reproductive technologies. Questions under consideration include what kinds of selection should be permitted, how to protect people with disabilities from discrimination, and how to ensure transparent oversight of commercial practices. The challenge is to balance respect for individual choice and medical benefit against the collective risks of normalising selection and commodifying human traits.
As these technologies move from possibility to practice, the conversation is likely to intensify. The experience of those born with genetic conditions — and the intimate, often painful reflections about what might have been — underscores why the debate is not just technical but deeply moral, touching on identity, value and the kind of society people want to create.