Why to Know or Not to Know? Stakeholders’ Attitudes Towards Prodromal Dementia Diagnosis: Psycho-Social and Ethical Implications in Cross-Cultural Comparison
Department of Medical Ethics and History of Medicine
Funding: German-Israeli Foundation for Scientific Research and Development (GIF)
Project Period: 2018 – 2020
Carried out by:
- Prof. Dr. Silke Schicktanz (Head of the German research team)
- Prof. Dr. Perla Werner (Head of the Israeli research team)
- Dr. Zümrüt Alpinar Sencan (project coordinator)
- Dr. Natalie Ulitsa (University of Haifa)
This project will be conducted in cooperation with the University of Haifa.
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.
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.
- Alpinar-Sencan, Z.*, Schicktanz, S.*, Ulitsa, N. Shefet, D., Werner, P. (2022). "Moral motivation regarding dementia risk testing among affected persons in Germany and Israel". Journal of Medical Ethics. 48: 861-867. doi: 10.1136/medethics-2020-106990 (*Joint first authors) (Link) (Blog Post)
- Werner, P., Ulitsa, N., Shephet, D., Abojabel, H., Alpinar-Sencan, Z., & Schicktanz, S. (2021). "Fear about Alzheimer's disease among Israeli and German laypersons, persons with Mild Neurocognitive Disorder and their relatives: A qualitative study". International Psychogeriatrics, 33(10): 1019-1034. doi:10.1017/S1041610220003397 (Link)
- Alpinar-Sencan, Z., Schicktanz, S. (2020). “Addressing Ethical Challlenges of Disclosure in Dementia Prediction: Limitations of Current Guidelines and Suggestions to Proceed”. BMC Medical Ethics 21(33). doi: 10.1186/s12910-020-00476-4. (Link)
- Lohmeyer, L., Alpinar-Sencan, Z., Schicktanz, S. (2021). “Attitudes towards Prediction and Early Diagnosis of Late-Onset Dementia: A Comparison of Tested Persons and Family Caregivers”. Aging and Mental Health. 25(5): 832-843. doi: 10.1080/13607863.2020.1727851. (Link)
- Alpinar-Sencan, Z.,Lohmeyer, L., Schicktanz, S. (2020). “Planning Later Life with Dementia: Comparing Family Caregivers’ Perspective on Biomarkers with Laypersons’ Attitudes towards Genetic Testing of Dementia Prediction”. New Genetics and Society. 39(1): 52-79. doi: 10.1080/14636778.2019.1637719. (Link)
The folllowing two publications are part of a project funded by the faculty's internal research funding programme 2017 of the University Medical Center Göttingen "Ethical implications of early diagnosis and prediction of dementia: A socio-empirical study with affected persons":
- Jongsma, K., Perry, J., Schicktanz, S., Radenbach, K. (2020). Motivations for people with cognitive impairment to complete an advance research directive – a qualitative interview study. BMC Psychiatry 20(360). doi.org/10.1186/s12888-020-02741-7
- Jongsma, K., Perry, J., Schicktanz, S. (2018). Forschungsvorausverfügungen in der Demenzforschung: Viele konkrete Fragen sind laut deutscher Experten noch zu klären, Dtsch Arztebl, 115(39): A-1696 / B-1430 / C-1416.
- Werner, P. and Schicktanz, S. (2018). Practical and ethical aspects of advance research directives for research on healthy aging: German and Israeli professionals' perspectives. 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.
- Heidelberg 2022. Stakeholders’ Attitiudes towards Dementia Risk Testing and Early Diagnosis of Alzheimer’s Disease: Insights from a Cross-Cultural Study. Hybrid Symposium on Genetic Counseling in European Universities – The Case of Neurodegenrative Diseases, Network Aging Research, Heidelberg University, Heidelberg, Germany. (Alpinar-Sencan & Ulitsa) (Dec.)
- Basel 2022. Provision of Dementia Care: Insights from a Qualitative Study with the Members of the Turkish Immigrant Community in Germany. 16th World Congress of Bioethics, University of Basel, Switzerland. (July)
- Basel 2022. “Being Well Informed” as the Basis for “Good Care”: Moving towrads Standards for Counseling for Dementia Prediciton and Early Diagnosis in Germany. 16th World Congress of Bioethics, University of Basel, Switzerland. (Alpinar-Sencan & Perry) (July)
- 2022. Challenges of Disclosure in Dementia Risk Prediction: Insights from Various Stakeholders’ Perspectives in Germany. “Global Implementation of Blood-Based Biomarkers (BBB) in AD: Part II: Gaps and Opportunities”, Alzheimer’s and Dementia Research Webinars, Alzheimer’s Association. (Alpinar-Sencan & Perry) (March)
- Berlin 2021. Moral Motivation Regarding Dementia Risk Testing Among Affected Persons in Germany and Israel. Annual Conference of the German Association for Psychiatry, Psychotherapy and Psychosomatics (DGPPN), CityCube, Berlin, Germany. (Alpinar-Sencan & Schicktanz) (Nov.)
- Online (Erlangen-Nürnberg) 2021. Hearing Diverse Perspectives to Improve Future Practices in Dementia Medicine: A Comparative Analysis of Attitudes towards Early Diagnosis and Prediction of Dementia Across Stakeholder Groups in Germany. Annual Conference of the German Academy of Ethics in Medicine [Jahrestagung 2021 der Akademie für Ethik in der Medizin (AEM)], Friedrich-Alexander University, Erlangen-Nürnberg, Germany. (Sept.)
- Online (Göttingen) 2020. What Lies Beneath? Moral Motivation Regarding Predictive Biomarker Testing and Preclinical Diagnosis Among Affected Persons in Germany and Israel. Internationales Online Symposium, “Dementia Prediction and Risk Reduction: Socio-Cultural Insights, Ethical Reflections and Future Developments”, University Medical Center Göttingen, Göttingen, Germany. (Alpinar-Sencan & Ulitsa) (Dec.)
- Göttingen 2019. Challenges of Dealing with Dementia Prediciton – Various Stakeholders’ Perspectives. Wintzer-Workshop, “Demenz-Prävention und Pflege im wohlfahrtsstaatlichen Wandel”, Ethik und Geschichte der Medizin, Universirtätsmedizin Göttingen, Germany. (Perry & Alpianr-Sencan) (Dez.)
- Peterborough 2019. Is There a ‘New Dementia’ and ‘Prevention Paradigm’? Ethical Reflections on Affected Persons Along with Professionals’ Expectations and Experiences in Germany. Trent Aging “Take Back Aging; Power, Critique, Imagination”, Peterborough, Ontario, Canada. (Schicktanz) (May)
- Barcelona 2018. Early Dementia Diagnosis and Planning Later Life: Preliminary Results of an Empirical-Ethical Study. 28th Alzheimer Europe Conference, Barcelona, Spain. (Alpinar-Sencan, Lohmeyer & Schicktanz) (Oct)
- Amsterdam 2018. 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, The Netherlands. (Alpinar-Sencan, Lohmeyer & Schicktanz) (Sep)
- Lisbon 2018. 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, Portugal. (Schicktanz) (Jun)
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.
International Online Symposium
Dementia Prediction and Risk Reduction: Socio-Cultural Insights, Ethical Reflections and Future Developments
Here you can find the Announcement including all important information (PDF) and the Program (PDF) of our Online Symposium.
Here are the presentations and slides from the speakers:
Click here to see an overview of the topics and speeches.
Click here to view the recorded presentations on the UMG YouTube channel.
- Dr. Nati Blum (Israeli Alzheimer's Association), “How do advocacy groups deal with the ‘new dementia’?” (click here to view)
- Prof. Dr. Baldwin van Gorp (KU Leuven), “The role of the media in avoiding stigmatization” (click here to view)
- Prof. Dr. Perla Werner (University of Haifa), “Fear of dementia: an enabler or an impediment to prediction?” (click here to view)
- Dr. Richard Milne (Society and Ethics Research Group, Connecting Science, Wellcome Genome Campus, Cambridge), “Risk disclosure and its consequences: Perspectives of asymptomatic research participants in the UK and Spain” (click here to view)
- Julia Perry, M.A. (University Medical Center Göttingen) & Dr. Karin Jongsma (Utrecht University), “Advance research directives for dementia research – What do affected people think? Insights from an interview study in Germany” (click here to view)
- Dr. Zümrüt Alpinar Sencan (University Medical Center Göttingen) & Dr. Natalie Ulitsa (University of Haifa), “What lies beneath? Moral motivation regarding predictive biomarker testing and preclinical diagnosis among affected persons in Germany and Israel” (click here to view)
- Prof. Dr. Georg Marckmann (Ludwig-Maximilians University Munich), “Ethical reflection on public health communication for dementia risk reduction” (click here to view)
- Prof. Dr. Israel Issi Doron (University of Haifa), “Legal and ethical issues surrounding risk prediction of persons with dementia” (click here to view)
- Prof. Dr. Annette Leibing (University of Montréal), “Critical aspects of promoting dementia prevention” (click here to view)
- Prof. Dr. Perla Werner (University of Haifa) & Prof. Dr. Silke Schicktanz (University Medical Center Göttingen), “Brainstorming for the development of an ethical framework on dementia risk prediction” (click here to view)