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)
Dementia is a broad term for an irreversible and progressive decline in one’s mental abilities, which would seriously affect the daily life of those who are affected. Current developments in predictive medicine show some promise for identifying the persons at risk for development of MCI (Mild Cognitive Impairment) and Alzheimer’s disease. Various biomarkers (biological markers), which give hope for detecting the changes at a preclinical stage before appearance of overwhelming symptoms, are currently under examination and validation. Despite its importance, providing such predictive risk information is accompanied by moral and psychosocial dilemmas in terms of its advantages and pitfalls. To be informed of being at risk can be beneficial regarding financial and emotional preparation (arranging care, preparing advance directives, informing the family, etc.). However, the lack of a cure and the likely psychological burdens raise concerns about the desirability of knowing such risk information.
The discussion on ethical and legal issues about how and when to disclose predictive risk information about the risk of developing a disease continues. The conflict between the hypothetical harmful consequences of disclosure and the individual’s right to know continues.
Our research aim is to explore the experiences, attitudes and concerns towards PRD (prodromal dementia - a preclinical stage) of main stakeholders (persons with dementia, their families and caregivers, experts, decision makers and laypersons).
Methods and Prospect
To gain insight into their perspectives, we will conduct focus groups with lay and affected persons with SCI/MCI diagnosis and make semi-structured expert interviews both in Germany and in Israel with similar guidelines and sampling rules. We will adopt a comparative, cross-cultural bioethics method within a multi-stakeholders’ framework, which will help:
- close the gap between expert and public culture,
- explore cultural similarities and differences among different stakeholders’ levels both at a national and a cross-national level,
- understand how moral and psycho-social attitudes regarding early diagnosis of dementia are embedded in social and cultural contexts.
With this project, we aim to provide, not only theoretically but also, an empirically-driven ethical framework for addressing concerns and psycho-social risks and for promoting the potential benefits of prodromal dementia diagnosis in clinical as well as broader societal contexts.
This project will be conducted in cooperation with the University of Haifa (PI: Prof. Dr. Perla Werner).
Werner, P. and Schicktanz, S. (2018). Practical and ethical aspects of advance research directives for resarch on healthy aging: German and Israeli professionals' perspcetives. Front. Med., 5(81). doi: 103389/fmed.2018.00081 (Link)
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.
Alpinar-Sencan, Z. Reflections on Prognosis and Early Diagnosis of Dementia: Preliminary Results of an Empirical-Ethical Study with the Affected and Laypersons. EACME (European Association of Centers of Medical Ethics) Annual Conference: “Ethics in Action”, Amsterdam 2018. (Alpinar-Sencan, Lohmeyer & Schicktanz) (Sep)
Schicktanz, Silke. Planning later life and responsibilisation in the (self-)management of dementia prediction. 17th Biennial Conference of European Society for Health and Medical Sociology (ESMHS), Lisbon, 2018. (Jun)
Scientific Meetings Organized
Alpinar-Sencan, Z. 2018. Title of Panel: Dementia Research and Later Life Planning: Insights from Patient, Professional Stakeholder and Public Engagement Studies. EACME (European Association of Centers of Medical Ethics) Annual Conference. VU University Medical Centre, Amsterdam, The Netherlands, September 6.