Aging Research | Health Literacy

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

Duration : 07/2021-06/2024
Project Board
  • Prof. Dr. Christiane Woopen
  • RA Dr. Björn Schmitz-Luhn
  • Coordinator: Johanne Stümpel, M.Sc.
Project Team

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)
Dr. Carolin Schwegler (German Linguistics, Universität Koblenz-Landau)

Funding Institution: BMBF

Federal Ministry of Education and Research

Funding Institution: ERA-NET NEURON

Network of European Funding for Neuroscience Research

Background

Predictive medicine provides increasingly precise and more accessible ways to determine individual risks to develop a condition in the future. Symptom-based diagnostics of diseases and their therapy are thus increasingly being supplemented or even replaced by new methods of prediction and prevention. However, these improvements for medical care are also accompanied by a wide range of impacts on the life of the individual, on the health care system and on our society.
For Alzheimer's disease (AD), early detection capabilities are also rapidly evolving. Likely, there will very soon be basic blood tests allowing prediction of an individual's risk for AD, which will be accessible to a broad population. These and other examples suggest that prediction will become increasingly essential to health care. Its impact on people's perceptions of health and disease, its actual use, and its specific effects in a solidarity-based health care system are, however, largely unclear.

Research questions and objectives

This development raises a number of questions:

  • What does the paradigm shift towards predictive medicine mean for the human being, its needs, perspectives and communication?
  • What effects does predictive medicine have on the individual, and the decision to have an easily accessible test to assess personal risks of later disease performed?
  • What if there is knowledge about future risk, but no available treatment for the disease?
  • What effects on society, language, public discourse, regulation, and the health care system does the ever-easier access to individual risk prediction have?

The PreTAD project will therefore initially identify individual needs and different perspectives of people regarding the prediction of AD. For this purpose, individuals with first symptoms (SCD, subjective cognitive decline), individuals with family history of AD or APOE4 allele carriers as well as healthy individuals will be questioned in this study.

Moreover, an overall goal of the project is to identify the effects of the paradigm shift in medicine from an individual, linguistic, legal and societal perspective in order to derive implications for practice. On this basis, recommendations for the practical handling of the possibilities of predictive medicine will be developed for the prediction and medical care of AD.

 

Contact

Johanne Stümpel

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

+49 (0)221 - 470 89115
johanne.stuempel[at]uk-koeln.de