Ethics and the predictive turn in Alzheimer’s

Abstract

AbstractBackgroundRising knowledge about fundamental molecular mechanisms of diseases, the possibility to digitally collect a wealth of lifestyle data, and increasing diagnostic capabilities in early risk prediction make it as easy as never before to calculate a personalized risk for future diseases. Knowing and influencing that risk becomes a matter of personal choice and responsibility. Consequences both on the individual and on the societal level result from this predictive turn in medicine. By means of the evolving accessibility and reliability of biomarker‐based diagnostics and risk prediction in Alzheimer’s disease (AD), we address the ethical perspective on this highly relevant topic.MethodIn the ethical part of the PreTAD project, we pursue a Mixed‐Methods approach and will (1) conduct a survey with 150 individuals within the healthy population (50 per participating country; baseline + 6‐month follow‐up). Participants will be surveyed with quantitative standardized tests, newly developed questions, and by utilizing hypothetical scenarios of AD biomarker risk disclosure. Employing hypothetical scenarios serves to reveal the needs and attitudes of healthy individuals regarding early prediction of AD. We will (2) conduct 40 narrative interviews (baseline + 6‐month follow‐up) with healthy individuals, healthy individuals at risk (AD family history or APOE4 carriers), individuals diagnosed with subjective cognitive decline (SCD) (> 4 weeks), and individuals with recent (≤ 4 weeks) SCD diagnosis.ResultPredictive knowledge can be associated with different perspectives on the self, discrimination and (self‐)stigmatization. We therefore address self‐perception, self‐determination as well as identity and authenticity with regard to the attitudes of people sharing different prior experiences with AD. We want to learn about the relationship between identity, authenticity and attitudes toward a personalized risk profile for future disease. Additionally, we aim at highlighting the individual’s needs in the course of an AD risk prediction in different groups of individuals, providing a detailed analysis of this phenomenon in a trinational and interdisciplinary (clinical, ethical, legal and linguistic) perspective.ConclusionIn this presentation, we will outline the methodology of a multilevel ethical analysis on fundamental questions of the paradigm shift towards predictive medicine ‐ exemplified by AD.