Prof. dr. M.H.N. Schermer
Early diagnosis of Alzheimers disease: conceptual considerations and ethical guidance
The number of people with Alzheimers Disease (AD) is likely to rise over the next decades. This forms a major challenge to society as a whole and efforts are made to reduce this burden. In the hope for future treatments to prevent or slow down the disease, there is a strong movement towards an ever-earlier diagnosis of AD. It is now possible to detect biomarkers – in cerebrospinal fluid or on neuroimaging – that are presumed to reflect brain changes eventually leading to clinical dementia, in persons with no or only mild cognitive impairment. This has led to a reconceptualization of AD, and discussions on the newly proposed concepts of preclinical and prodromal AD. While currently mainly used in research, both biomarkers and the concepts of preclinical and prodromal AD are currently moving into clinical practice, without any ethical frameworks present. This is problematic, since current tests have insufficient diagnostic accuracy, and there is no treatment for AD available, making it highly questionable whether this move towards ever earlier AD diagnosis is desirable.
The aim of this project is to provide ethical guidance and recommendations for early AD diagnostics in clinical practice.
1. How should the reconceptualization of AD be evaluated from a philosophical and ethical point of view, and how should the concepts preclinical and prodromal AD be understood: as disease states or as at-risk-of-disease states?
2. What are the ethical arguments for and against aiming for early diagnosis of AD using biomarkers, in the absence of clinical symptoms of dementia?
3. What are current practices regarding the use of biomarkers and the concepts preclinical and prodromal AD in the Dutch clinical setting and what are the ethical arguments of clinicians regarding these practices?
4. How should the relevant ethical arguments be weighed, in light of the analysis of the reconceptualization of AD, and the perspectives of those directly involved?