1,721,010 research outputs found
Challenges of anticipation of future decisions in dementia and dementia research
No full textAnticipation 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
Counseling and disclosure practices in predictive Alzheimer's disease diagnostics: A scoping review
No full textNew possibilities of biomarker-based predictive technologies for Alzheimer's disease (AD) have become more reliable as well as more accessible. Standardized clinical recommendations and guidance for counseling and disclosure in this context are not yet well developed. Our scoping review identified publications from database searches in PubMed, PsycINFO, LIVIVO, and Web of Science. Inclusion criteria were: (1) information or counseling, (2) biomarkers and a type of cognitive impairment or AD, and (3) published between 2005 and 2024. We identified 63 articles and synthesized them along the categories of staged information provision: pre-test counseling, disclosure, and post-disclosure follow-up. Most publications referred to the context of disclosure (48), followed by pre-test counseling (33), and post-disclosure follow-up (31). Some publications referred to all stages of counseling (17). Our findings highlight the need to further develop and specify comprehensive and standardized guidelines for counseling, disclosure, and post-disclosure follow-up in the context of AD biomarker testing
Fair allocation of telemedical counseling services in early detection of Alzheimer's disease: Empirically informed ethical considerations
No full textAbstract INTRODUCTION Counseling for early Alzheimer's disease (AD) detection is essential, especially regarding emerging blood‐based biomarkers. The increasing need for counseling requires innovative approaches and simultaneously consideration of ethical issues. ETHICAL CONSIDERATIONS Telemedicine is discussed as a means of providing more accessible and fairer health care. Nevertheless, barriers to accessing telemedicine are important to consider, such as required technical hardware and ethical criteria regarding interpersonal counseling, including individual adaptation of information to ensure self‐determined decision‐making. Regarding resource allocation, issues must be considered before telemedicine is implemented. THEORETICAL REFLECTION Fair counseling structures require the discussion of resource allocation. To avoid justifying telemedical counseling based solely on cost‐effectiveness and overlooking further ethical demands, we propose a ranked approach. To strengthening self‐determined decisions, we argue that equal care structures can be built on these prerequisite aspects and enable realization of fair resource allocation as a last step. Highlights Blood‐based biomarkers in Alzheimer's disease (AD) facilitate easier access to risk assessment and early detection. Currently, insufficient pre‐diagnostic counseling structures exist which support informed decision‐making. Telemedicine may be a meaningful approach for innovative counseling services. However, unresolved ethical and legal issues regarding telemedical counseling services for the early detection of AD must first be addressed. Telemedical counseling in the early detection of AD is yet rarely discussed in the literature. Therefore, we combine insights from ethical analysis of telemedical counseling with the ethical issues of fair and empowering counseling in the early detection of AD separately. In a second step, we discuss the use of telemedical counseling for the early detection of AD inductively to highlight ethically relevant aspects and present our considerations in light of the principles of autonomy, non‐maleficence, beneficence, and justice. To provide ethical guidance for possible future implementation without overprioritizing one approach to counseling for the early detection of AD, considerations regarding fair resource allocation are required. We argue that three major ethical topics should be considered in the future: Strengthening individuals’ autonomy, equal care structures, and fair resource allocation.Universitätsmedizin Göttingen https://doi.org/10.13039/10001914
Counseling and disclosure practices in predictive Alzheimer's disease diagnostics: A scoping review
No full textAbstract New possibilities of biomarker‐based predictive technologies for Alzheimer's disease (AD) have become more reliable as well as more accessible. Standardized clinical recommendations and guidance for counseling and disclosure in this context are not yet well developed. Our scoping review identified publications from database searches in PubMed, PsycINFO, LIVIVO, and Web of Science. Inclusion criteria were: (1) information or counseling, (2) biomarkers and a type of cognitive impairment or AD, and (3) published between 2005 and 2024. We identified 63 articles and synthesized them along the categories of staged information provision: pre‐test counseling, disclosure, and post‐disclosure follow‐up. Most publications referred to the context of disclosure (48), followed by pre‐test counseling (33), and post‐disclosure follow‐up (31). Some publications referred to all stages of counseling (17). Our findings highlight the need to further develop and specify comprehensive and standardized guidelines for counseling, disclosure, and post‐disclosure follow‐up in the context of AD biomarker testing. Highlights New possibilities of biomarker‐based predictive technologies for Alzheimer's disease (AD) have become more reliable and also more accessible. However, clinical recommendations and guidance for counseling and disclosure in the context of AD biomarker testing are currently not well developed. We carried out a scoping review with the aim to generate an overview of the scientific literature and guidance available regarding counseling, biomarker test result and dementia risk disclosure, and clinical management prior to and in the course of a biomarker‐based diagnosis in early stages of AD. We identified 63 relevant articles. Most publications referred to the context of disclosure (48), followed by pre‐test counseling (33), and post‐disclosure follow‐up (31). Some publications referred to all stages of counseling (17). Our findings highlight the urgent need for national and international consensus guidelines for comprehensive and staged counseling and disclosure practices. While most publications identify relevant ethical challenges posed for counseling practices in the context of AD biomarker testing, they rarely present any practical recommendations for clinicians, on how and what to counsel on a concrete level.Bundesministerium für Bildung und Forschung https://doi.org/10.13039/501100002347Medizinische Fakultät, Universität zu Köln https://doi.org/10.13039/501100024583Open-Access-Publikationsfonds 202
Lehrmaterialien aus dem Diskursverfahren Konfliktfall Demenzvorhersage
No full textSoftcover, 18,6x24In Deutschland sind derzeit ca. 1,7 Mio. Menschen an Demenz erkrankt. In der aktuellen Demenzforschung zeichnet sich ein Paradigmenwechsel bei der Prädiktion, Früherkennung und Diagnose von Demenz ab. Mit dem vom Bundesministerium für Bildung und Forschung (BMBF) geförderten Projekt „Entscheidungskonflikt prädiktive Demenz-Diagnostik: Diskursverfahren zu Beratungs- und Ethikkompetenzen mit Stakeholdern und Studierenden“ sind wir, vom Institut für Ethik und Geschichte der Medizin der Universitätsmedizin Göttingen in Kooperation mit dem IEGUS - Institut ungeklärte rechtliche, ethische und soziale Dilemmata im Kontext der Prädiktion angegangen. Um diese Herausforderungen auch für zukünftige Berufstätige zugänglich zu machen sowie eine Sensibilisierung des Themas Demenz zu ermöglichen, haben wir im Projekt ein Lehrkonzept entwickelt. Das Lehrkonzept richtet sich vorrangig an Lehrende und Lernende aus gesundheitsbezogenen Studiengängen und Ausbildungsprogrammen. Hierbei wird vor allem die Vermittlung ethischer und praktischer Fragestellungen der Demenz und der Demenzprädiktion erprobt.In Germany, approximately 1.7 million people currently suffer from dementia. In current dementia research, a paradigm shift is emerging in the prediction, early detection and diagnosis of dementia. With the project "Entscheidungskonflikt prädiktive Demenz-Diagnostik: Diskursverfahren zu Beratungs- und Ethikkompetenzen mit Stakeholdern und Studierenden" (Decision Conflict in Predictive Dementia Diagnostics: Discourse Procedures on Counseling and Ethical Competencies with Stakeholders and Students), funded by the German Federal Ministry of Education and Research (BMBF), we from the Institute for Ethics and History of Medicine at the University Medical Center Göttingen, in cooperation with the IEGUS - Institute, addressed unresolved legal, ethical and social dilemmas in the context of prediction. In order to make these challenges accessible to future professionals as well as to raise awareness of the topic of dementia, we have developed a teaching concept in the project. The teaching concept is primarily aimed at teachers and learners from health-related courses of study and training programs. In particular, the teaching of ethical and practical issues of dementia and dementia prediction will be tested.
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Motivations for people with cognitive impairment to complete an advance research directive – a qualitative interview study
No full textOpen-Access-Publikationsfonds 202
Physicians’ communication patterns for motivating rectal cancer patients to biomarker research: Empirical insights and ethical issues
No full text 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 ( n = 54) and semi-structured interviews with patients ( n = 40). 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. </jats:p
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