PUBLIC understanding of genetic testing for dementia remains limited and often misinformed, according to a new study analyzing Twitter conversations from 2010 to 2023. The research offers crucial insights for healthcare professionals navigating patient questions around Alzheimer’s disease risk and genetic diagnostics.
Researchers used unsupervised deep learning techniques, specifically a BERT-based model, to examine 3045 original tweets in English that mentioned dementia and genetic testing. Their analysis revealed three main themes emerging from over a decade of online discourse: the appropriateness of using genetic testing in dementia diagnosis, the psychosocial impact of testing, and the role of genetics in the treatment and prevention of Alzheimer’s disease.
The first theme dominated the conversation, accounting for 90.6% of tweets. These posts revealed widespread uncertainty and disagreement about the clinical relevance and ethical considerations of genetic testing for dementia, with many users questioning its usefulness and appropriateness.
The second theme, increasingly shaped by organizational users over time, highlighted concerns about emotional and psychological consequences. Some tweets in this category spread misinformation—such as false claims suggesting genetic tests are suitable for children—amplifying the need for stronger guidance in public messaging.
Meanwhile, tweets within the third theme, mostly shared by individual users, reflected a growing public interest in genetic testing as a tool for Alzheimer’s prevention and treatment. This suggests an evolving conversation that blends curiosity with hope, though often lacking clarity about what these tests can truly offer.
The study underscores a pressing need for healthcare professionals to engage with patients and the public to clarify misconceptions, especially about the nondeterministic nature of dementia genetic testing. With social media platforms like Twitter serving as influential sources of health information, clinicians and organizations must play a more active role in shaping accurate narratives.
Reference:
Pak NE et al. Trends and Gaps in Public Perception of Genetic Testing for Dementia Risk: Unsupervised Deep Learning of Twitter Posts From 2010 to 2023. Alzheimer Dis Assoc Disord. 2025. doi: 10.1097/WAD.0000000000000667.
