Ethics and history of medicine > Research > Research Silke Schicktanz > Geriatric Medicine & Dementia > PREPARE

Preparing Primary Care for Alzheimer’s Disease Risk Communication: Ethical Implications of Early Detection (PREPARE)

Department of Medical Ethics and History of Medicine

Subproject "Ethical Implications of Early Detection of Alzheimer's Disease" and Project Coordination

Funding: Federal Ministry of Education and Research (BMBF)

Project Period: Aug 2023 - Jul 2026

Carried out by:

Dr. Julia Perry
Prof. Dr. Silke Schicktanz
Jana Wegehöft, B.A.

Project partners:

Dr. Marina Boccardi - German Center for Neurodegenerative Diseases (DZNE), Rostock
Prof. Dr. Anja Schneider - German Center for Neurodegenerative Diseases (DZNE), Bonn
Dr. Felix Rebitschek, Prof. Dr. Gerd Gigerenzer und Michael Zitzmann - Harding Center for Risk Literacy, University of Potsdam

Background

Neuroscientific research is constantly providing new insights into the structure and function of the human brain. It contributes to a better understanding of human decisions, behavior, emotions and social interactions. Innovations in this field also have great potential for use in the diagnosis and treatment of various neurological and psychiatric disorders. For some time now, current research has been focusing on the use of various biomarkers (e.g. blood values) to identify neurological diseases such as Alzheimer's disease (AD). However, new diagnostic possibilities are also associated with risks, as their application can influence human nature and our decisions. It is therefore important to identify and assess the opportunities and risks arising from technical and methodological progress.

Research content

The PREPARE network will therefore reflect on the ethical, normative and social implications of AD risk assessment. In four sub-projects, PREPARE will provide empirical findings on the specific attitudes and needs of GPs, people at risk and their families. Among other things, the following questions will be asked: What attitudes, communication needs, experiences and knowledge do GPs and those affected and their relatives have with regard to determining an AD risk? What ethical implications arise from various future scenarios for the use of biomarkers? How well does the communication of AD risks support informed testing decisions by those affected?

For this purpose, attitudes, information needs as well as risk and health competencies of general practitioners, affected persons and relatives are surveyed by means of questionnaires and interviews. With the help of a risk communication analysis and a language analysis aimed at destigmatization, communication guidelines, digital resources and practical PREPARE materials for primary healthcare will be developed.

Aim

As part of the project, we will develop a risk communication tool for lay people that enables communicators to present relevant information in a balanced and transparent way so that patients can weigh up the potential consequences of biomarker tests and make an informed decision. This will take into account both the limited risk literacy, particularly of people with low language levels, and the specific needs and limited technical abilities of people who are already cognitively impaired (e.g. reduced attentional control).

The Sub Projects

Sub Project 1 (SP1): Ethical implications of early detection of Alzheimer's disease

In this SP, we first develop an ethical assessment of different screening/risk prediction scenarios for the future. The information gathered through the development of the scenarios can provide important insights for decision-makers. The interactive scenario creation and evaluation will be documented in various steps through protocols and graphical recordings. The results will be published on this website in the form of a peer-reviewed article and a lay-oriented summary.

Sub Project 2 (SP2): Empirical analysis of GPs' attitudes, needs and knowledge

In SP2, we will use empirical research to investigate a complex set of GPs' knowledge and attitudes. This includes their beliefs, communication barriers, risk literacy and attitudes towards early diagnosis based on treatment options, care delivery, perceived benefits, current patient demand and other elements that influence GPs' attitudes. These may vary in different contexts, the analysis of attitudes and sustainability of implementation may need to be stratified.

Sub project 3 (SP3): Empirical analysis of patients' attitudes, needs and knowledge

In the case of the patients in SP3, we will assess previous experiences and current needs of patients and relatives in the context of risk understanding and risk competence. In addition, we will assess the moral attitudes of patients and their relatives towards the stigmatization of dementia. Different attitudes towards biomarker-based diagnostics, the influence of sociodemographics, illness experience, care experience, lifestyle aspects and communication needs and preferences will be investigated. For this collaborative project, we will only include patients below the stage of moderate dementia, i.e. patients who have full legal capacity and are able to give informed consent.

Sub Project 4 (SP4): Personalized risk communication for risk prediction

In order to implement the development of the online tool for personalized risk prediction in this SP4, a backend (server and databases) and an editorial frontend will first be created by implementing test risk models. In addition to evidence-based presentation principles, scientific piloting with user groups (other SPs) will be used for the necessary user frontend for doctor-patient interaction in order to implement it in a target group- and care-oriented manner.

To find out about the current project progress, recruitment phases, publications and other media products, please visit the project website.

Project Website