What are the expectations of persons who decide to have their risk of Alzheimer's Disease tested? What should doctors pay attention to when ascertaining individual risks? What is the benefit of risk determination for patients and their close others, while options to treat the disease remain insufficient?
According to current estimates, the number of individuals suffering from Alzheimer's Disease worldwide is 40 million - and rising. The burdens imposed on the patients, on their caregivers, and on society are considerable.
Due to recent advances in the prediction of Alzheimer's Disease, examinations for risk assessment are rapidly increasing - often by the patients' own demand. This prediction may, however, have a major psychological impact on patients and their close others, since there is no effective treatment to prevent Alzheimer's Disease.
The interdisciplinary project "Ethical and Legal Framework for Predictive Diagnosis of Alzheimer's Disease: Quality of Life of Individuals at Risk and Their Close Others (PreDADQoL)" addresses these issues and aims to close an important research gap by providing an ethical and legal framework for the predictive testing of Alzheimer's Disease. The project will be conducted under the auspices of the Center for Ethics, Rights, Economics and Social Sciences of Health (ceres) at the University of Cologne in cooperation with the Fundació ACE Barcelona, one of the largest Alzheimer's clinics in Europe.
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