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 evaluate opportunities and risks arising from technical and methodological progress.
The PREPARE project is part of the BMBF funding guideline for the promotion of research projects on ethical, legal and social aspects of neuroscience. The aim of this measure is to identify the ethical, legal and social implications in the neurosciences. The state of knowledge is expanded and thus the scientific basis for an informed social and scientific discourse is laid.
Research content
Prodromal and preclinical identification of neurological disorders such as Alzheimer’s disease (AD) via etiologic biomarkers, including blood markers, is currently being researched. Prior to their application in primary care, the clinical and personal benefit-harm ratio in the context of preventive and therapeutic options as well as potential psychosocial effects, such as stigmatization, need to be established.
The PREPARE consortium will reflect on the ethical, normative and social implications of AD risk assessment. In four sub-projects, PREPARE will collect and evaluate empirical findings on the specific attitudes, needs and expectations of general practitioners as well as patients and their relatives. Among other things, the following questions will be asked: What attitudes, communication needs, experiences and knowledge do GPs, patients and their relatives have with regard to determining the risk of AD? 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?
Methodology
To this aim, attitudes, information needs as well as risk and health competencies of general practitioners, patients and relatives are investigated by means of questionnaires and interviews. Various future scenarios, such as AD risk assessment in German primary care, taking into account pluralistic orientations as well as social, economic and legal factors, are ethically reflected upon.
Aims
The project will develop communication guidelines, digital resources and practical PREPARE materials for primary healthcare with the help of a risk communication analysis and a language analysis aimed at destigmatization. Visual materials and explanatory videos will be made available on this project website and are also intended to inform a lay audience.
A risk communication tool has been developed to enable 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. It takes into account people’s limited risk literacy as well as specific needs and limited technical capabilities. The development of the tool is based on preliminary technical work in the form of prototype development for communicating clinical scoring models to non-specialists.
The Subprojects
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.
In SP2, we will use empirical research to investigate a complex set of GPs’ knowledge and attitudes through an online survey. This includes their beliefs, communication barriers, risk literacy and attitudes towards early diagnosis based on treatment options, care services, 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.
In SP3, we will use a paper-based survey with patients and relatives to assess previous experiences and current needs in the context of risk understanding and risk literacy. 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.
In order to implement the development of the online tool for personalized risk prediction in this TP4, 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 TPs) 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.