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Ethical challenges to the responsible communication of individual results from observational neurodegeneration research
Journal article

Ethical challenges to the responsible communication of individual results from observational neurodegeneration research

Deven K. Burks and Jane S. Paulsen
Developments in Neuroethics and Bioethics, Vol.9, pp.199-234
2026
DOI: 10.1016/bs.dnb.2026.02.009

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Abstract

Over two decades of research into the presymptomatic stages of neurodegenerative disorders have prompted a shift towards defining these disorders biologically, rather than the traditional reliance on a clinical diagnosis of dementia. Researchers can identify both genetic and non-genetic biological markers of disease before symptom onset: amyloid and tau in Alzheimer’s disease; neurofilament light chain and MRI volumetric measures in amyotrophic lateral sclerosis, Huntington’s disease, and frontotemporal dementia. Therefore, researchers have available risk and susceptibility markers that predict the future trajectory of clinically manifest disease. Yet this research has outpaced the translation of these markers into clinical practice and the communication of individual research results to study participants. This gap between biomarker research, clinical translation, and scientific communication challenges the successful, responsible conduct of observational studies. To orient researchers, several expert committees have developed guidance that generally discourages researchers from communicating results that have not undergone specific qualification for a context of use backed by appropriate tests of reliability and validity. Nevertheless, few results from presymptomatic neurodegeneration research meet these standards, and study participants may request or expect results below this evidentiary threshold. This mismatch between supply-side standards and demand-side expectations renders existing guidance of unclear action-guiding value. In this chapter, we explore an ethics of uncertainty as a framework for assessing whether and which results to communicate from observational neurodegeneration research. We conclude that this framework is generally useful when applied carefully but also requires participatory and deliberative stakeholder engagement to define fair guidelines for communicating results.
 Biomarkers Ethics Alzheimer’s disease Communication Disclosure Engagement Justice Neurodegeneration Observational research Uncertainty

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