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Article type: Review Article
Authors: Schicktanz, Silkea; 1; * | Alpinar-Segawa, Zümrüta; b; 1 | Ulitsa, Nataliea; c; 1 | Perry, Juliaa | Werner, Perlac
Affiliations: [a] Department of Medical Ethics and History of Medicine, University Medical Center Göttingen, Göttingen, Germany | [b] Institute for Ethics, History and Philosophy of Medicine, Hannover Medical School, Hannover, Germany | [c] Department of Community Mental Health, Faculty of Social Welfare & Health Sciences, University of Haifa, Haifa, Israel
Correspondence: [*] Correspondence to: Silke Schicktanz, Department of Medical Ethics and History of Medicine, University Medical Center Göttingen, Humboldtallee 36, 37073 Göttingen, Germany. E-mail: sschick@gwdg.de.
Note: [1] These authors contributed equally to this work.
Abstract: Biomarkers for predicting Alzheimer’s disease (AD) are advancing and their implementation in various healthcare systems is imminent. There is a need for ethical standards addressing information needs, socio-ethical concerns, and expectations of healthy and at-risk persons. We present an ethical approach that integrates different existing ethical frameworks and discussion of our empirical, cross-cultural findings in a multi-layered perspective by addressing three levels. The micro-level focuses on the communication between counseling professionals, persons at risk or in an early stage of dementia, and family members. The meso-level addresses interprofessional cooperation and exchange as a key element for best person-centered care. The macro-level considers public health promotion, the media, and public-funded research. This approach allows to address key ethical concepts including beneficence, non-maleficence, autonomy, informational self-determination, empowerment, and justice. Our contribution specifically examines the ethical challenges associated with AD prediction by means of biomarkers, based on insights from a German-Israeli comparison, and promotes a transdisciplinary discussion across different healthcare contexts. We propose a reflection on three levels to go beyond the clinical counseling context and to consider the rapidly evolving field of biomarkers in the coming years. Our ethical-practical recommendations should not be considered final, but rather procedural and will require continuous adaptation regarding culturally varying practices, new algorithms, meta-analyses, and re-evaluation of established recommendations.
Keywords: Alzheimer’s disease, communication, counseling, cross-cultural comparison, dementia, ethical recommendations, literacy, prediction
DOI: 10.3233/JAD-231137
Journal: Journal of Alzheimer's Disease, vol. 101, no. 4, pp. 1063-1081, 2024
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