Affiliations: [a] Department for Medical Ethics and History of Medicine, University Medical Center Göttingen, Göttingen, Germany
| [b] Department of Psychiatry and Psychotherapy, University Medical Center Göttingen, Göttingen, Germany
| [c] German Center for Neurodegenerative Diseases (DZNE), Göttingen, Germany
| [d] Department of Medical Sciences, iBiMED, University of Aveiro, Aveiro, Portugal
| [e] German Center for Neurodegenerative Diseases (DZNE), Bonn, Germany
| [f] Department for Neurodegenerative Diseases and Gerontopsychiatry, University Hospital Bonn, Bonn, Germany
Correspondence:
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Correspondence to: PD Dr. Mark Schweda, Department for Medical Ethics and History of Medicine, University Medical Center Göttingen, Humboldtallee 36, 37073 Göttingen, Germany. Tel.: +49 551 39 22116; E-mail: mark.schweda@medizin.uni-goettingen.de.
Note: [1] These authors contributed equally to this work.
Abstract: Background:Biomarker-supported testing for preclinical and prodromal Alzheimer’s disease (AD) finds its way into clinical practice. Professional attitudes and practices regarding disclosure and ethical issues are controversial in many countries. Objectives:Against this background, the objective was to survey the actual practice and the attitudes of physicians in German hospitals and memory clinics in order to explore possible practical insecurities and ethical concerns. Methods:A detailed survey with 37 items was conducted among medical professionals at German hospitals and memory clinics (n = 108). Analyses were performed using SPSS 21.0 (IBM). Findings were based on frequency and percentage distribution. Results:Nearly half of the respondents stated that persons with mild cognitive impairment and pathological cerebrospinal fluid biomarkers were informed they had or would soon develop AD. While 81% acknowledged a ‘right not to know’, 75% said that results were always communicated. A majority agreed there was a benefit of prediction or later life planning [end-of-life, financial, family, housing (73–75%)] but also expected high psychological stress (82%) and self-stigmatization (70%) for those tested. Conclusions:There is considerable heterogeneity and insecurity regarding prediction and early detection in the context of AD in Germany. Information of professionals and standardization of professional testing and disclosure practices are needed.
