Project: Ethical and Legal Framework for Predictive Diagnosis of Alzheimer’s Disease Quality of Life of Subjects at Risk and their Close Others

Acronym	PreDADQoL
Duration	01/06/2016 - 31/05/2019
Project Topic	The PreD-AD-QoL project aims at providing an empirically grounded ethical and legal framework for predictive diagnosis (PreD) of Alzheimer’s Disease (AD) in patients with mild cognitive impairment (MCI) as a condition of increased risk of AD, taking into account their closed others (e.g. partners, siblings, children) from the beginning. Keeping in mind that disease-modifying treatments are not yet established, a normative framework will be developed in which a broad concept of QoL serves as the crucial normative concept in information, counseling, decision making and care regarding PreD of AD. In this regard the objectives are: 1. To develop a normative (ethical and legal) framework for PreD of AD in patients with MCI based on a profound ethical analysis of individual and social implications as well as on fundamental legal considerations. 2. To provide empirical data on attitudes and expectations towards PreD and on its effects on QoL in patients with MCI and their close others. These empirical data will be obtained in two countries (Germany, Spain) to address transnational comparability as well. 3. To provide a guideline for information and counselling of patients with MCI and their close others before and after PreD of AD with special regard to the possible impact on quality of life and taking into account ethical and legal issues.
Network	ERA-NET NEURON II
Call	Ethical, Legal, and Social Aspects (ELSA) of Neuroscience

Project partner

Number	Name	Role	Country
1	University Hospital of Cologne	Coordinator	Germany
2	Fundacio ACE	Partner	Spain