By Zümrüt Alpinar-Sencan, Silke Schicktanz, Natalie Ulitsa and Perla Werner.
The availability of a test that would predict the likelihood of developing Alzheimer’s disease (AD) in the next ten years is a thrilling possibility. Thanks to the recent advances in biomarkers (biological markers, which are measurable indicators of a biological state or condition) research and developments in predictive medicine, identifying persons at high risk for developing late-onset AD may soon be possible even before the initial symptoms appear (preclinical stage). Demand for testing is increasing despite the lack of a cure and effective treatment options, the likely psychological burden, as well as uncertainties regarding the predictive value of tests. If so, what are the moral motivations underlying individuals’ desire to get tested anyway? Our article aims to deepen the bioethical debate by examining the wide spectrum of moral motivations for or against predictive testing and to draw attention to wider ethical, social and cultural implications of predictive tests.
The use of biomarkers is not yet recommended for clinical contexts. The psychosocial, ethical and cultural aspects of supplying information about dementia risk including predictive biomarker-based testing and biomarker-based forms of very early diagnosis in preclinical stages of dementia are yet to be explored and understood. In our article, we focus on affected people’s (i.e. people with Mild Neurocognitive Disorder, their relatives, family members of people with dementia) moral motivations (that is their basic moral attitudes or opinions) towards being for or against predictive testing and early diagnosis. We also sought to find out whether differences in AD testing attitudes vary on a cultural level. Since earlier studies focusing on various bioethical topics showed that patterns of moral motivation could be influenced by the cultural values embedded in national contexts, we referred to Germany and Israel for cultural comparison. Our study underlines the importance of counseling for future life planning and of informing the individuals who would like to use a predictive test. Besides, the inclusion of affected people’s expectations and preferences will boost the experts’ debate and fill in the research gap.
After analysing focus group discussions and semi-structured interviews, we identified four ethical categories structuring participants’ moral motivations to which the participants in both countries implicitly referred. In both countries, participants in all stakeholder groups mentioned potential long-term benefits of prospective risk assessment: the participants assessed predictive testing and early diagnosis positively when perceived as providing an opportunity to plan later life and make future decisions irrespective of the limited prevention and treatment options. However, the range of moral motivations was not limited only to aspects of beneficial use of dementia risk information: they also expressed moral attitudes relating to responsibility between individuals and the family, the desire for self-determination, and notions of a good life.
Last but not least, our explorative findings showed that some attitudes towards predictive testing and early diagnosis vary on a cultural level embedded in national contexts. For instance, we found a greater openness to suicide as well as a greater skepticism about test validity and a greater emphasis on personal autonomy among German participants, whereas a greater emphasis on trust in one’s family, a greater emphasis on negative feelings triggered by risk information and impact of personality was prevalent among Israeli participants. There is a need for more cross-cultural comparisons to see whether more general cultural patterns can explain these national-level differences.
As the technology advances, the implementation of biomarkers might soon become a part of daily clinical routine. For that reason, it is crucial to prepare the health systems accordingly. Non-genetic biomarkers tests cannot tell with certainty if and when an asymptomatic person might develop AD. This generates the importance of developing multi-professional counseling services, which addresses an interaction between professionals and affected persons. Clinicians should ensure that the tested persons understand the limits to validity and certainty of their personal risk results. Moreover, they should include information about life planning strategies when they offer counseling.
Our article is an outcome of our larger research project titled “Stakeholders’ Attitudes towards Prodromal Dementia Diagnosis: Psycho-Social and Ethical Implications in Cross-Cultural Comparison”, in which we empirically explored the experiences, attitudes and concerns of main stakeholders (i.e. people with Mild Neurocognitive Disorder, their relatives, family members of people with dementia, experts and laypersons) towards dementia risk information. The project was carried out collaboratively by Prof. Dr. Silke Schicktanz and Dr. Zümrüt Alpinar Sencan of the University Medical Center Göttingen, Germany, and Prof. Perla Werner, Dr. Natalie Ulitsa of University of Haifa, Israel.
Paper title: Moral motivation regarding dementia risk testing among affected persons in Germany and Israel
Author: Zümrüt Alpinar-Sencan*¹, Silke Schicktanz*¹, Natalie Ulitsa², Daphna Shefet³, Perla Werner² (*joint first authors)
Affiliations: Department of Medical Ethics and History of Medicine, University Medical Center Göttingen¹, Department of Community Mental Health, University of Haifa², Shalvata Mental Health Care Center, Faculty of Medicine, Tel Aviv University³.
Competing interests: None Declared.