Center for Life Ethics
Schaumburg-Lippe-Straße 7
D-53113 Bonn

 

+49 228 73 66100

 

lifeethics@uni-bonn.de

01.July 2021 - 28.February 2025

The Predictive Turn in Alzheimer’s Disease: Ethical, Clinical, Linguistic, and Legal Aspects (PreTAD)

The Predictive Turn in Alzheimer’s Disease: Ethical, Clinical, Linguistic, and Legal Aspects (PreTAD)

Background

Predictive medicine allows for increasingly precise and ever more accessible ways to determine individual risk estimates for future diseases. These developments are accompanied by manifold effects on the life of the individual, on the health care system, and our society.
In the area of Alzheimer's dementia, early detection possibilities are evolving rapidly. Simple blood tests may soon be available to enable a broad population to determine their individual Alzheimer’s risk.
How will people perceive themselves in the future if they know they are at high risk? How will our understanding of health and illness change? What impact will the predictive possibilities have on solidarity in our healthcare system?

Research Questions and Objectives

  • What are the attitudes of people in the general population toward predictive risk estimation for Alzheimer's dementia?
  • What impact does predictive testing have on individuals and their families?
  • What factors influence the use of predictive testing?
  • What are the obligations for legally sound information, education, and consent for predictive testing?
  • What are the implications of increasingly easy access to individual risk estimation for society, public discourse, the law, and the health care system?
  • How is language used to deal with the increasing possibilities of predictive testing?

 

In the PreTAD project, individual needs and different perspectives regarding the prediction of Alzheimer's dementia will be elaborated. To this end, this study will interview individuals with subjective symptoms of memory impairment (SCD, subjective cognitive decline), individuals with a family history of AD or APOE4 allele carriers, and healthy individuals.
The aim of the project is to explore the implications of the paradigm shift towards predictive medicine, using Alzheimer's dementia as an example on an individual, linguistic, legal and societal level in order to derive implications for practice. Recommendations for an ethically and legally appropriate handling of the possibilities of predictive medicine for the field of Alzheimer's dementia will be developed.

Project Coordination/Contact

© MedizinFotoKöln

Project Coordination PreTAD

M. Sc.
Annika Baumeister

Contact

Location

Center for Life Ethics

Schaumburg-Lippe-Straße 7

53113 Bonn

Contact

© MedizinFotoKöln

Project PreTAD

M. Sc.
Constanze Hübner

Contact

Location

Center for Life Ethics

Schaumburg-Lippe-Straße 7

53113 Bonn

Duration

07/2021–02/2025

Project Management

Prof. Dr. Christiane Woopen

Project Team

Dr. Ayda Rostamzadeh (Klinik und Poliklinik für Psychiatrie und Psychotherapie, Medizinische Fakultät, Universität zu Köln)
Prof. Dr. Frank Jessen (Klinik und Poliklinik für Psychiatrie und Psychotherapie, Medizinische Fakultät, Universität zu Köln)
Prof. Dr. Giovanni Frisoni (Centre de la mémoire, Hôpitaux Universitaires de Genève, Genf, Schweiz)
Prof. Dr. Mercè Boada (Fundaciò ACE, Barcelona, Spanien)
RA Dr. Björn Schmitz-Luhn (Center for Life Ethics, Rheinische Friedrich-Wilhelms-Universität Bonn)
Dr. Carolin Schwegler (Multidisciplinary Environmental Studies in the Humanities Universität zu Köln)

Funding Institutions

Federal Ministry of Education and Research (BMBF)
Network of European Funding for Neuroscience Research (ERA-NET NEURON)

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