WHY TO KNOW OR NOT TO KNOW? STAKEHOLDERS’ ATTITUDES TOWARDS PRODROMAL DEMENTIA DIAGNOSIS: PSYCHO-SOCIAL AND ETHICAL IMPLICATIONS IN CROSS-CULTURAL COMPARISON
Funded by German-Israeli Foundation for Scientific Research and Development (GIF)
(GIF Grant No: G-1413-119.4/2017)
Duration: 01/2018 – 12/2020
Dr. Zümrüt Alpinar Sencan (Project Coordinator)
Prof. Dr. Silke Schicktanz (PI)
The developments in technology, which call for a critical reflection on its implications, involve the early diagnosis and prediction of certain diseases, such as dementia. New research focuses on prodromal dementia (PRD), which is the preclinical stage of the disease. Despite its importance, early diagnosis brings about moral and psycho-social dilemmas and generates ethically important questions.
The aim of the study is to examine critically the perspectives of all the stakeholders, who might play a role in the diagnosis of prodromal dementia both in Germany and in Israel. The study will use qualitative research methods. To gain insight into their perspectives, we will conduct focus groups with affected persons and lay persons and interviews with health care professionals and decision-makers. This will help us identify the similarities and differences between stakeholders both at a national and a cross-national level. Adopting a cross-cultural, multi-stakeholders’ framework will allow us to understand how moral and psycho-social attitudes regarding the diagnosis are embedded in social and cultural contexts.
This project will be conducted in cooperation with the University of Haifa (Prof. Dr. Perla Werner (PI).
Werner, P. and Schicktanz, S. (2017). Competence and cognitive deterioration: Are we paying enough attention to ethical issues? In M. Schweda, L. Pfaller, K. Brauer, F. Adloff, and S. Schicktanz (Eds.). Planning Later Life: Bioethics and Public Health in Ageing Societies. London: Routledge.
Raz, A. and Schicktanz, S. (2016). Comparative Empirical Bioethics: Dilemmas of Genetic Testing and Euthanasia in Israel and Germany. Springer Briefs in Ethics, Berlin: Springer.
Schicktanz, Silke*, Schweda, M.*, Ballenger, J. F., Fox, P. J., Halpern, J., Kramer, J. H., Micco, G., Post, S. G., Thompson, C., Knight, R. T. and Jagust, W. J. (2014). Before it is too late: Professional responsibilities in late-onset Alzheimer’s research and pre-symptomatic prediction. Frontiers in Human Neuroscience, 8(921), 1-6 (*shared first authorship).
Schicktanz, S., Schweda, M., Wynne, B. (2012). The ethics of ‘public understanding of ethics’ – Why and how bioethics expertise should include public and patients’ voices. Medicine, Health Care and Philosophy, 15(2), 129-139.
Schicktanz, S. (2009). Zum Stellenwert der Betroffenheit, Öffentlichkeit und Deliberation im empirical turn der Medizinethik. Ethik in der Medizin, 21(3), 223-234.