In clinical research – whether pharmaceutical, genetic or biomarker research – it is important to protect research participants’ autonomy and to ensure or strengthen their control over health-related decisions. Empirical–ethical studies have argued that both the ethical concept and the current legalistic practice of informed consent should be adapted to the complexity of the clinical environment. For this, a better understanding of recruitment, for which also the physician–patient relationship plays an important role, is needed. Our aim is to ethically reflect (...) communication processes by identifying patterns used by physicians to motivate patients’ participation in clinical research and to assess whether patients also use these patterns in formulating their own research motivation. We conducted a secondary analysis with empirical data from a research project involving physicians and patients in a clinical research setting of a biomarker study for rectal cancer treatment. Our empirical data included observations of physician–patient consultations and semi-structured interviews with patients. Overall, we collected 93 interviews. We found two dominant communication patterns, which physicians applied for motivating patients to take part in this research study. Some forms of these patterns tend to mislead patients’ understanding, while others could justifiably be applied in this consultation setting without undermining patients’ autonomy. This insight that the physician–patient communication has a strong influence on patients increases the importance to strengthen physicians’ ethically acceptable communication patterns regarding research participation. We further suggest that there is a need for a critical reflection of the ethics committee’s requirements for information regarding research participation. (shrink)

Anticipation of future decisions can be important for individuals at risk for diseases to maintain autonomy over time. For future treatment and care decisions, advance care planning is accepted as a useful anticipation tool. As research with persons with dementia seems imperative to develop disease-modifying interventions, and with changing regulations regarding research participation in Germany, advance research directives (ARDs) are considered a solution to include persons with dementia in research in an ethically sound manner. However, little is known about what (...) affected people deem anticipatable.This contribution provides a critical reflection of the literature on anticipation and of a qualitative study on the assessment of ARDs with persons with cognitive impairment in Germany. It combines theoretical and empirical reflections to inform the ethical-legal discourse.Anticipation involves the conceptual separation of the past, the present, and the future. Including dimensions such as preparedness, injunction, and optimization helps in establishing a framework for anticipatory decision-making. While dementia may offer a window of time to consider future decisions, individual beliefs about dementia including fears about stigma, loss of personhood, and solitude strongly impact anticipating sentiments. Concepts of anticipation can be useful for the examination of uncertainty, changing values, needs, and preferences interconnected with the dementia trajectory and can serve as a means to make an uncertain future more concrete. However, fears of losing one’s autonomy in the process of dementia also apply to possibilities of anticipation as these require cognitive assessment and reassessment of an imagined future with dementia. (shrink)

Given the lack of effective curative treatment options and in light of a significant reconceptualization of Alzheimer’s disease, the focus of dementia research has shifted towards prevention, risk prediction, and detection in very early disease stages. In the context of these shifts, the edited volume Preventing Dementia?: Critical Perspectives on a New Paradigm of Preparing for Old Age (edited by Annette Leibing and Silke Schicktanz) collects critical and insightful positions on the new paradigm of dementia prevention from an interdisciplinary and (...) international perspective. The editors introduce the overarching topic of prevention by reflecting on the optimistic framing of modifiable risk factors and their novelty in the dementia context. Leibing and Schicktanz call for a cautious reception of the findings in the Lancet report(s) and draw attention to epistemic, ethical, and socio-political issues of what the editors term the contested “new dementia” and to the effect that this might have on rethinking individual and societal perceptions of aging. The contributions of the anthology depict the social and cultural dimensions of dementia discourses and consider the ethical implications of the changing conceptions of Alzheimer’s disease as well as the shift towards early disease stages and prevention. With this, the anthology initiates a debate about the often implicit unresolved social, ethical, and political implications and preconditions of the medical understanding and handling of cognitive disorders. (shrink)