Moral motivation regarding dementia risk testing among affected persons in Germany and Israel

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.

Impact of sharing Alzheimer's disease biomarkers with individuals without dementia: A systematic review and meta‐analysis of empirical data

“…Of these, 19 presented quantitative data, [30][31][32][33][34][35][36][37][38][39][40][41][42][43][44][45][46][47][48] 1 mixed methods research, 49 and 15 qualitative data. [50][51][52][53][54][55][56][57][58][59][60][61][62][63][64] As the designs varied considerably, we classified them in three categories, according to population and timing. Twenty-seven articles reported on perspectives of personal stakeholders, that is, members of the general public, research participants, study partners, patients, caregivers, or relatives.…”

Ethical Aspects of Prodromal Synucleinopathy Prognostic Counseling

“…Potential advantages of disclosure in this context include enabling patients and their families and friends to adjust, prepare, plan, and seek additional resources and care support as needed. 21 22…”

“…Potential advantages of disclosure in this context include enabling patients and their families and friends to adjust, prepare, plan, and seek additional resources and care support as needed. 21,22 Another consideration is the context in which a diagnosis of iRBD is made-namely, is the diagnosis being made incidentally or asymptomatically or, alternatively, does it account for a symptomatic concern for which the patient is seeking direct medical care? Differences in these settings will impact the providers' clinical and ethical obligations, since they relate to the patient's preparedness to learn the information shared.…”

Ethical Issues of Primary and Secondary Dementia Prevention

“…However, the question arises whether or not to offer or even recommend early dementia diagnostics to interested persons. At least some affected or unaffected persons are open to measures for dementia prediction (Alpinar-Sencan et al, 2022). In Switzerland, nearly 50% of the population would use a reliable test in the asymptomatic state (without considering the costs) (Seifert & Schelling, 2019).…”

“…Such questions have increasingly been the subject of systematic ethical analysis (Angehrn et al, 2020; McKeown et al, 2021; Schicktanz et al, 2021; Smedinga et al, 2018; Ursin et al, 2021; Vanderschaeghe et al, 2018; Whitehouse, 2019). The moral attitudes of affected persons, relatives, professionals, or study participants toward dementia prediction have also been increasingly studied lately (Alpinar-Sencan et al, 2022; Bailey et al, 2019; Giezendanner et al, 2019; Lohmeyer et al, 2021; Merl et al, 2022; Milne et al, 2018; Schweda et al, 2018; Tromp et al, 2021). Complex ethical issues can also arise regarding dementia-prevention strategies, and these are increasingly being discussed (Forlini & Hall, 2017; Horstkötter et al, 2021; Lawless et al, 2018; Leibing & Schicktanz, 2020; Petersen & Schicktanz, 2021).…”