Article Text

Download PDFPDF
Moral motivation regarding dementia risk testing among affected persons in Germany and Israel
  1. Zümrüt Alpinar-Sencan1,
  2. Silke Schicktanz1,
  3. Natalie Ulitsa2,
  4. Daphna Shefet3,
  5. Perla Werner2
  1. 1Department for Medical Ethics and History of Medicine, University Medical Center Göttingen, Göttingen, Niedersachsen, Germany
  2. 2Department of Community Mental Health, University of Haifa, Haifa, Israel
  3. 3Shalvata Mental Health Care Center, Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel
  1. Correspondence to Professor Silke Schicktanz, Department for Medical Ethics and History of Medicine, University Medical Center Göttingen, 37073 Gottingen, Niedersachsen, Germany; silke.schicktanz{at}medizin.uni-goettingen.de

Abstract

Recent advances in biomarkers may soon make it possible to identify persons at high risk for late-onset Alzheimer’s disease at a presymptomatic (preclinical) stage. Popular demand for testing is increasing despite the lack of cure and effective prevention options and despite uncertainties regarding the predictive value of biomarker tests. This underscores the relevance of the ethical, cultural and social implications of predictive testing and the need to advance the bioethical debate beyond considerations of clinical consequences. Our qualitative study included three groups of affected persons: People with mild neurocognitive disorder, their relatives and family caregivers of people with dementia. We explored their moral motivations regarding predictive, biomarker-based testing and preclinical diagnostics. We interviewed affected individuals in Germany and Israel (N=88; 44 participants in each country). Transcripts of 12 focus groups and 12 semistructured interviews were content analysed with a focus on the moral motivations of affected persons in their justification of why they accept or reject predictive testing and early diagnosis. We grouped the underlying aspects of moral motivation into four ethical categories: beneficence as a form of personal utility focusing on well-being, the ties of responsibility linking families and their individual members, the importance of self-determination by later life planning and notions of a good life. In general, cultural parallels among these motives were very obvious. Cultural variation occurred mainly in openness to suicide, scepticism about test validity and emphasis on personal autonomy. The study underscores the importance of counselling for life-planning issues and of informing test candidates about problems with test validity and about the ambiguity of test results.

  • dementia
  • aged
  • end of life
  • cultural pluralism
  • technology/risk assessment

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

Statistics from Altmetric.com

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

View Full Text

Footnotes

  • ZA-S and SiS are joint first authors.

  • Contributors SiS conceptualised the research questions and general ideas, designed the study, supervised data collection and data analysis in Germany and revised written drafts. ZAS conducted the underlying research and the data analysis in Germany and wrote the first draft. ZAS and SiS share the first authorship as they contributed equally to subsequent drafts. NU collected the data and conducted data analysis in Israel. DS assisted in the data collection in Israel. PW designed the study, supervised the data collection and data analyses in Israel and assisted with writing the article. All authors approved the final manuscript.

  • Funding This study was funded by a grant from the German-Israeli Foundation for Scientific Research and Development (grant number G-1413-119.4/2017) to SS and PW.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

Other content recommended for you