Aging Research  Health Literacy 

Ethical and Legal Framework for Predictive Diagnosis of Alzheimer's Disease (PreDADQoL)

Duration: 06/2016-05/2019

Project Board


Prof. Dr. med. Christiane Woopen
Coordinator: Carolin Schwegler, M.A.

Project Team


Prof. Dr. med. Frank Jessen
Prof. Dr. iur. Christian Katzenmeier
Mercè Boada, MD, PhD (Fundació ACE, Barcelona)
RA Dr. Björn Schmitz-Luhn

 

Project Partners


Prof. Federico de Montalvo Jääskeläinen, Ph.D. (Universidad Pontificia Comillas, Madrid)
Núria Terribas (Fundació Grífols, Barcelona)
Antoni Gelonch (Fundació ACE, Barcelona)


Background

The recent developments in biomarker research now allow predictive diagnosis of Alzheimer's Disease in patients with mild cognitive impairment (MCI), which is an at-risk condition of Alzheimer's. Up to 80% of MCI subjects with positive biomarker pathology will progress to dementia within 5 years. In patients with MCI but without biomarker evidence less than 10% progress to dementia. Thus, 100% prediction has not been achieved. Even though there is no effective treatment to prevent Alzheimer's in MCI patients, the determination of predictive biomarkers in these patients is rapidly increasing and often even demanded by patients. Currently, however, there is no framework on the ethical and legal aspects of this type of predictive testing, and there is no guidance for physicians and clinicians on how to counsel patients with MCI.

Objectives

The project aims at providing such a framework and guidance by combining an ethical approach with focuses on a broad concept of quality of life and a legal approach looking at fundamental legal questions with a transnational empirical project, partnering with one of Europe's largest Alzheimer Clinics, the Fundaciò ACE in Barcelona. The PreDADQoL study yields to find out about attitudes and expectations as well as effects on subjective quality of life of MCI patients and their close others before and after Prediction for Alzheimer's. This unique transnational, empirically informed normative approach is urgently needed in the face of rapidly expanding worldwide application of predictive diagnosis of Alzheimer's disease.

Contact

Carolin Schwegler, M.A.

ceres – Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health
Universitätsstr. 91
D-50931 Köln
Germany

+49 (0)221 470-89106
ceres-alzheimer[at]uk-koeln.de