Neurogenetics, Alzheimer’s, and the Cautionary Path Forward
Addressing Discrimination and Eugenic Risks
William Utermohlen’s self-portraits reveal the psychological and artistic impact of his Alzheimer’s diagnosis. The left shows a realistic, carefully shaded sketch with a sharp gaze, while the right, drawn in charcoal, collapses into abstraction. Distorted features and frantic lines reflect his struggle with identity and disorientation.
Introduction
Neuroscience stands at the threshold of a transformative era, driven by the capacity to identify individuals at risk for Alzheimer's disease (AD) long before clinical symptoms emerge. AD is the most prevalent cause of dementia. This diagnosis is laden with fear for its clinical outcomes and social repercussions, including the erosion of memory, independence, and rationality, sometimes culminating in "social death" (Largent et al., 2021). Spurred by over $2.8 billion in FY 2021 research funding, scientific efforts now concentrate on developing interventions for cognitively healthy individuals carrying biological risk markers (Largent et al., 2021). This has created a new clinical category: preclinical AD, marked by pathological changes without cognitive decline (Largent et al., 2021). While early detection shows promise, predictive neurogenetics, such as genetic risk assessment and embryo screening, raises complex ethical concerns regarding discrimination and the potential revival of eugenic ideologies (Haining et al., 2025; Largent et al., 2021).
Background and Controversy Definition
Contemporary neurogenetics aims to identify individuals at heightened AD risk through genetic variant analysis. For late-onset AD, no single gene determines disease onset, but the Apolipoprotein E (APOE) ϵ4 allele significantly elevates risk (Largent et al., 2021). Approximately one to two percent of the population is homozygous for APOE ϵ4. These individuals face lifetime AD risk exceeding 50% (Largent et al., 2021). As disease-modifying treatments become viable, biomarker and genetic testing will likely be incorporated into routine clinical assessment of asymptomatic individuals (Largent et al., 2021).
The core controversy stems from the social consequences of disclosing this sensitive health information. For individuals learning they are at heightened risk, sharing this information is "unexpectedly burdensome" because it "speaks uniquely to identity" (Largent et al., 2021). The controversy extends to reproductive technologies, including Polygenic Risk Scores (PRSs) for embryo screening (PGT-P) and heritable human embryo editing using CRISPR-Cas9, raising concerns about justice and equity (Haining et al., 2025; Wiley et al., 2025).
Argument 1: The Threat of Discrimination and Inadequate Legal Protection
The primary ethical challenge for individuals receiving AD risk information is the pervasive threat of discrimination and stigma (Largent et al., 2021). Studies of cognitively unimpaired participants from the A4 Study and API Generation Program who learned their amyloid or APOE results documented serious concerns about discrimination in employment, housing, and insurance (Largent et al., 2021).
Working participants "rarely reported sharing their results with colleagues," fearing disclosure would "diminish the confidence that people [at work] have" in their cognitive abilities, potentially leading to exclusion from opportunities or being "asked to retire" (Largent et al., 2021). Participants with elevated amyloid worried they could be "ruled out of the place I want to live" (continuing care retirement communities), calling this prospect "dreadful," and expressed concern that results could "affect . . . insurability," especially for long-term care insurance (Largent et al., 2021).
These fears are justified by legal framework limitations. While the Genetic Information Nondiscrimination Act (GINA) provides employment protections for APOEϵ4 carriers, it does not prevent insurers from denying long-term care insurance (Largent et al., 2021). Crucially, GINA offers "no protections whatsoever" to individuals with AD biomarkers like elevated amyloid, leaving most preclinical AD diagnoses legally vulnerable (Largent et al., 2021).
Argument 2: Socioeconomic Inequity and the Revival of Eugenic Ideologies in Reproductive Neurogenetics
The intersection of neurogenetics and reproductive technologies raises pressing concerns about socioeconomic inequity and the resurgence of eugenic ideologies (Haining et al., 2025; Wiley et al., 2025). Advanced interventions like PRSs for embryo screening (PGT-P) and CRISPR-Cas9 embryo editing disproportionately benefit those with substantial financial resources. Without adequate regulation or insurance coverage, only affluent individuals can access these technologies, magnifying health disparities and widening class divides (Wiley et al., 2025).
Ethical concerns regarding eugenics intensify as reproductive neurogenetics is framed as enhancing population health. Eugenics refers to "beliefs and practices aimed at controlling reproduction in order to improve the characteristics of human populations" (Wiley et al., 2025). Embryo selection based on polygenic risk profiles risks becoming "a eugenic tool" (Wiley et al., 2025). This is especially troubling given PRSs' scientific limitations: "low predictive accuracy," restricted specificity and sensitivity, and inability to "fully account for... environmental factors" (Haining et al., 2025). Despite this low-quality information, embryo selection based on these scores echoes historical eugenic policies, risking social marginalization and "disrespect toward people with disabilities" (Haining et al., 2025; Wiley et al., 2025). The deployment of neurogenetic technologies in reproductive contexts must be critically evaluated for both scientific validity and implications for reinforcing inequity and reviving eugenic paradigms.
Counterarguments and Rebuttals
Proponents justify advanced neurogenetics by appealing to reproductive autonomy and procreative beneficence, which is the ethical obligation to select a child expected to have the "best life possible" (Haining et al., 2025; Wiley et al., 2025). However, PRSs' limited predictive accuracy means providing prospective parents with low-quality information risks misleading them, thereby "inhibit[ing] autonomy" rather than promoting it (Haining et al., 2025). Because PRSs cannot account for environmental factors, predictions for adult-onset conditions like AD remain highly uncertain (Haining et al., 2025). Moreover, selective practices could lead to "decreased willingness to accommodate and support persons with disabilities" in society, failing to protect vulnerable groups from institutional discrimination and reinforcing historical eugenic principles (Wiley et al., 2025).
Conclusion
Although neurogenetic progress in Alzheimer's disease can transform early detection and intervention, these advancements are inextricably linked with significant ethical challenges. Increased discrimination risks in employment, housing, and insurance, exacerbated by inadequate legal protections, necessitate a measured approach. Employing neurogenetic technologies in reproductive settings intensifies socioeconomic inequity and risks reintroducing eugenic ideologies. Consequently, this field requires rigorous regulatory frameworks and robust ethical oversight to ensure implementation fosters justice and equity rather than perpetuating discrimination or historical injustices.
References
Haining, C. M., Savulescu, J., Keogh, L., & Schaefer, G. O. (2025). Polygenic risk scores and embryonic screening: considerations for regulation. J Med Ethics, 51, 719–728. https://jme.bmj.com/content/51/10/719
Largent, E. A., Stites, S. D., Harkins, K., & Karlawish, J. (2021). ‘That would be dreadful’: The ethical, legal, and social challenges of sharing your Alzheimer’s disease biomarker and genetic testing results with others. Journal of Law and the Biosciences, 8(1), lsab004. https://doi.org/10.1093/jlb/lsab004
Wiley, L., Cheek, M., LaFar, E., Ma, X., Sekowski, J., Tanguturi, N., & Iltis, A. (2025). The Ethics of Human Embryo Editing via CRISPR-Cas9 Technology: A Systematic Review of Ethical Arguments, Reasons, and Concerns. HEC Forum, 37, 267–303. https://doi.org/10.1007/s10730-024-09538-1
