Dilemmas of Predictive Dementia Diagnostics:
German Stakeholder Conference for Improving Ethics Competence in Healthcare and Life Sciences - „Prä-Diadem“
Research on new methods for the prediction of dementia using biomarkers may soon enable cheap testing of one’s likelihood to contract one of the major forms of dementia. Although dementia prediction is considered a significant medical advance, it also raises ethical and legal issues as well as potential psychosocial risks for individuals. Its potential advantages include more effective research, earlier detection and potentially sooner administering of treatment options, in the future, and the ability of affected individuals to personally supervise their nursing care and estate planning. In terms of health policy, enabling a shift from care to prevention. Possible problems lie in the mental burden of anticipating (potentially in error) the onset of dementia as well as in forms of social rejection as no cure currently exists. In addition, because test results are expressed as notoriously non-intuitive risk probabilities, patient counseling and informed consent become especially challenging.
To date, no ethical, legal and public debate exists focusing on these relevant topics. The project “Dilemmas of Predictive Dementia Diagnostics”, funded by the German Ministry of Education and Research, is to initiate and structure such a debate. The central issues focus on three areas: the ethics of the healthcare professions involved in test counseling, legal issues in areas such as advance care planning and informed consent of participants in future research as well as general social and ethical issues such as the prevention of stigmatization, discrimination.
- Ethical guidelines for learning to recognize and address problems in patient counseling, informed consent, and advance care
- Educational materials for health professionals in training
- Information for memory clinics and self-help groups
- Resources for continuing the public debate
Professor Silke Schicktanz of the Department of Medical Ethics and History of Medicine of the University Medical Center Göttingen, is responsible for methodology, didactics, and analysis. The IEGUS Institute (Berlin/Bochum) is responsible for communications and logistics.
An interdisciplinary board of advisors provides constructive criticism regarding project methods and results and advises should unexpected problems arise. Its members are preeminent experts in fields directly relevant to dementia prediction and its implications:
- Dr. Frank Bergmann, Chair of the Kassenärztliche Vereinigung Nordrhein and former Chair of the Professional Association of German Neurologists.
- Prof. Dr. Klaus Gerwert, Professor of Biophysics at the Ruhr-Uni-Bochum and Speaker of the Protein Research Unit Ruhr within Europe (PURE)
- Dr. Jürgen Gohde, Chair of the Board of Advisors of the IEGUS Institute and former Chair of the Kuratorium Deutsche Altershilfe
- Prof. Dr. Hans Gutzmann, former President of the German Society for Geriatric Psychiatry and Psychotherapy
- Prof. Dr. Stefan Huster, Professor of Public Law, Social Welfare and Health Law, and the Philosophy of Law at the Ruhr University Bochum
- Sabine Jansen, Executive Director of the German Alzheimer Society
- Prof. Dr. Martina Roes, Site Speaker and Group Leader, German Center for Neurodegenerative Diseases (DZNE), Witten
The project will generate written and personal input from stakeholders from an array of disciplines and social groups and use this to create educational materials in a participatory process also involving students. In the context of this project, “stakeholders” are defined as persons, groups, and institutions who are responsible for or who are affected by decisions made in the field of biomarker-based dementia prediction and who could thus make a moral claim to be involved in the formulation of these decisions. Because prediction is a complex topic, experts in the field are not expressly excluded. When possible, however, organizations representing specific interests and claims are to be included rather than individuals with no mandate of representation.
The discourse method used in the project takes the form of an hourglass (see the figure below). Initially, a very broad spectrum of stakeholders will be invited to formulate their perspectives on dementia prediction and formulate these tersely on one written page. They are asked to identify the central concerns they have regarding improved prediction technology and how these should be addressed. Stakeholders may, but are not required to, formulate specific demands.
We expect the number of problems and positions identified to be fewer than the number of participating stakeholders. Thus, from the written statements the project leadership team will distil and cluster common and contradictory positions. On the basis of the provided written statements, the project team will invite individuals of their respective organizations to a stakeholder conference to deepen the debate face-to-face. The Stakeholder Conference (which takes place on June 21-23, 2018 in Göttingen) will bring together 20 to 40 individuals in several moderated discussions. Both written and oral arguments will flow into the project reports.
The intention of this method is to find a median between breadth of outreach and the effectiveness of face-to-face discourse. While a very large number of written statements by relevant stakeholders can be included, a limit to the number of participants invited to debate oral arguments is advisable in order to maximize the effectiveness of this form of communication. Project leadership shall justify to the project board of advisors and to the public its choices of participants and topics for debate. All stakeholder statements shall be published.
The results of the conference will be used to create teaching tools for relevant healthcare professions. These will be put to the test in principle-oriented, case-based discussions among approx. 50 students in Göttingen and Bochum, and among memory clinic teams, who may then suggest changes. All inputs flow into a final set of criteria and into educational and informational tools that shall be published for free download. The project will end in August, 2019 with a public presentation for a national and international audience.
- Working group "Aging and Ethics" of the Academy for Ethics in Medicine (AEM) (in German)
- Federal Working Group of Senior Citizens' Organizations (BAGSO) (in German)
- Federal Outpatient Psychiatric Nursing Initiative (BAPP) (in German)
- The Deutsche Alzheimer Gesellschaft e.V. (DAlzG) fully supports the drafted opinion
- The German Society for General Medicine and Family Medicine (DEGAM) welcomes the broad discussion among experts and the general public and fully endorses the statement
- German Society for CSF Diagnostics and Clinical Neurochemistry (DGLN) (in German)
- German Society for Neurology (DGN) (in German)
- German Professional Association for Social Work (DBSH) (in German)
- German Nursing Council (in German)
- German Center for Neurodegenerative Diseases (DZNE) (in German)
- Institute for Technology Assessment and Systems Analysis (ITAS) (in German)
- Project Advisory Board (in German)
- The Central Council of Muslims in Germany (ZMD) welcomes the broad discussion among experts and the general public and fully endorses the statement
Schicktanz, S., Perry, J., Herten, B., Stock Gissendanner, S. (2020). Demenzprädiktion als ethische Herausforderung: Stakeholder fordern Beratungsstandards für Deutschland. Nervenarzt. doi.org/10.1007/s00115-020-00985-y
Schicktanz S, Stock Gissendanner S, Perry J, Herten B, Bury F. (2018). Wollen wir es wissen? Ein gesellschaftlicher Diskurs zur Demenzvorhersage. ProAlter 2018/4: 60-62. PDF
Stock Gissendanner S, Perry J, Herten B, Roll A, Schicktanz S. (2019). Ein Blick in die Zukunft? Die Demenzvorhersage und ihre sozialen, rechtlichen und ethischen Implikationen. pflegen: Demenz 2019/50: 48-51. PDF
Stock Gissendanner S, Schicktanz S, Perry J, Herten B, Englisch L. (2019). Was wäre, wenn ...? - Konfliktfall Demenzvorhersage. Welt der Krankenversicherung 2019/5: 210-14.
Graphic recording of the panel discussion on the "Conflict of Dementia Prediction" PDF (in German)
Project publication: „Was bringt uns eine Demenzvorhersage?" PDF
Project publication: „Was bietet ein Stakeholder-Ansatz für die Bioethik?" PDF
Project postcard PDF (in German)
Students of the University Medical Center Göttingen / University of Göttingen commented on the joint statement of the stakeholder conference in the context of the discourse procedure “Conflict of Dementia Prediction” with a Poster (in German)
In the summer semester 2019 students from Göttingen reflected on the way we deal with dementia and dementia prediction. They documented their impression in the form of Film clips. (in German)
"Challenges of Dealing with Dementia Prediciton – Various Stakeholders’ Perspectives". Winter-Workshop: Demenz-Prävention und Pflege im wohlfahrtsstaatlichen Wandel, Department of Medical Ethics and History of Medicine, University Medical Center Göttingen, 06.12.2019 in Göttingen (Perry, J. & Alpinar-Sencan, Z.)
"Ethische und kommunikative Herausforderungen der Demenzvorhersage: Ergebnisse der Stakeholder-Konferenz und weiterer Diskussionsbedarf", 16th Ingolstadt Medical Ethics Colloquium, 14.11.2019 in Ingolstadt (Schicktanz, S.)
"Pro und Contra einer Demenzvorhersage – ein Blick aus der Ethik", öffentlicher Vortrag mit Diskussion im Rahmen einer Vortragsreihe des Bürger- und Verschönerungsvereins Schönbach, 01.11.2019 in Schönbach (Perry, J.)
"Demenz – Versunken im Meer des Vergessens?", Podiumsdiskussion im Rahmen von „Forschung made in Niedersachsen“, 29.10.2019 an der Universität Göttingen (Schicktanz, S.)
"Stakeholder-Beteiligung als Methode: eine Reflexion", AEM Annual Conference, 28.09.2019 in Göttingen (Perry, J.)
"Stakeholder-Involvement for the Prospective Assessment of Medical Technologies: A Methodological Reflection", EACME Annual Conference: Rethinking Ethics in 21st Century Europe, 13.09.2019 in Oxford (Perry, J.)
"Diskursverfahren Konfliktfall Demenzvorhersage—Methode und Ergebnisse", INNOlab2019 Zukunfts(t)raum Gesundheit, 11.09.2019 an der Ruhr-Universität Bochum (Stock Gissendanner, S.)
"Stakeholder-Beteiligung zur prospektiven Einschätzung medizinischer Technologien: eine methodische Reflexion", Conference Questioning or Participating? The Role of Stakeholders in Health Research, 28.03.2019 in Munich (Perry, J.)
"Diskursverfahren 'Konfliktfall Demenzvorhersage'—Methode und Zwischenergebnisse", DGPPN 2018, 29.11.2018 in Berlin (Stock Gissendanner, S.)
"Recht auf Wissen oder Schutz vor Wissen? Öffentliche Ethik-Positionen zur Demenzvorhersage", DGPPN 2018, 28.11.2018 in Berlin (Stock Gissendanner, S.)
"Jetzige und zukünftige Herausforderungen im Zusammenhang mit der Prädiktion von Demenz: Ethische und soziale Gesichtspunkten", Annual Conference on Dementia Service NRW "Demenz 2030 - Wie wollen wir leben?", 21.11.2018 in Wuppertal (Schicktanz, S.)
"Welche ethischen Aspekte sind bei der Vorhersage einer Alzheimer Demenz zu bedenken?", Wednesday series organized by the Clinic for Psychiatry and Psychotherapy, University Medical Center Göttingen, 18.10.2017 in Göttingen (Schicktanz, S)
"Dilemmas of predictive dementia diagnostics: German stakeholder conference for improving ethics competence in healthcare professions" (Lecture in a Symposium), EACME 2018, 6.-8.09.2018 in Amsterdam (Perry, J.)
"Dilemmas of predictive dementia diagnostics: German stakeholder conference for improving ethics competence in the healthcare professions", Alzheimer Europe Conference 2017, 02.-04.10.2017 in Berlin (Stock Gissendanner, S.)
Nationale Demenzstrategie 2020 vom Bundesgesundheitsministerium und dem Ministerium für Familie, Senioren, Frauen und Jugend [zur PDF]
Klingler, C., Kühlmeyer, K. & Schmietow, B. (2019) Befragen oder Beteiligen? Die Rolle von Stakeholdern in der Gesundheitsforschung. Ein Tagungsbericht der Organisatorinnen, Bundesgesundheitsblatt 62, 1378-1383, doi: 10.1007/s00103-019-03028-3 (Conference report; in German)
Petersen, N. (2019). Konfliktfall Demenzvorhersage: Chancen und Risiken der Demenzvorhersage – Wie gestalten wir die zukünftige Praxis?, in: Ethik in der Medizin, online first: https://doi.org/10.1007/s00481-019-00553-2 (Confrence report; in German).
Jessen, F. (2019). Bluttests für die Alzheimer-Erkrankung. Aktueller Stand und ethische Implikationen, Nervenheilkunde 2019; 38(11): 824-827, https://doi.org/10.1055/a-0985-8210 (in German)
The Just Health Initiative reported on the opportunities and risks of dementia prediction and the discourse process: www.gerechte-gesundheit-magazin.de/ausgabe-42/wollen-wir-das-wissen/ (in German). The advisory board is reprsented by its members Prof. Gerwert and Prof. Roes in the interview.
"Dementia Prediction and the New Age of Predictive Medicine". In the "Interview of the Month", Prof. Dr. Silke Schicktanz talks about the ethical, social and legal challenge of dementia prediction, "Just Health" 29.04.2019: https://www.gerechte-gesundheit.de/debatte/interviews/uebersicht/detail/interview/65.html (in German).
Stakeholder confernce – 22.-23. June 2018
You can download the program here (PDF; in German)
Press conference – 05.April 2019
"Opportunities and risks of dementia prediction: Where is there a need for political action?"
You can download the program here (PDF; in German)
Final confernce (closing event) – 06. September 2019
You can download the program here (PDF; in German)
Follow-Up Project: Research on the early stage of Alzheimer's disease: German Alzheimer's Society awards research funding to project consortium
The Deutsche Alzheimer Gesellschaft e.V. Selbsthilfe Demenz (DAlzG) is supporting four projects with its research funding in 2019, which are dedicated to the patient-oriented research of dementia of the early stage of Alzheimer's. After an assessment by the technical advisory board, the DAlzG board selected four projects from among the more than 30 submitted proposals for research projects, including a proposal from the University Medical Center Göttingen (Institute for Ethics and History of Medicine and Clinic for Psychiatry and Psychotherapy) and of the IEGUS - Institute for European Health and Social Economy.
New counseling models for people in the early stages of Alzheimer's disease or in the context of a dementia prediction
The project "Well advised: New multimodal and standardized counseling models for people in the early stages of Alzheimer's disease or in the context of a dementia prediction", submitted by Prof. Dr. Silke Schicktanz, Julia Perry and Dr. Katrin Radenbach (UMG) and Benjamin Herten (IEGUS) receive funding of € 150,000. Biomarkers enable the diagnosis of Alzheimer's disease many years before the first clinical symptoms appear. However, this form of dementia risk prediction lacks specific target group-specific, quality-assured, low-threshold and flexible information and advice offers. The research project wants to close this gap and connect it with existing international and national consulting concepts for the early diagnosis of Alzheimer's disease. This was also a central demand from the BMBF-funded discourse procedure “Conflict of Dementia Prediction”.