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  1. Ethical concerns with the use of intelligent assistive technology: findings from a qualitative study with professional stakeholders.Tenzin Wangmo, Mirjam Lipps, Reto W. Kressig & Marcello Ienca - 2019 - BMC Medical Ethics 20 (1):1-11.
    Background Advances in artificial intelligence, robotics and wearable computing are creating novel technological opportunities for mitigating the global burden of population ageing and improving the quality of care for older adults with dementia and/or age-related disability. Intelligent assistive technology is the umbrella term defining this ever-evolving spectrum of intelligent applications for the older and disabled population. However, the implementation of IATs has been observed to be sub-optimal due to a number of barriers in the translation of novel applications from the (...)
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  • Planning Ahead for Dementia Research Participation: Insights from a Survey of Older Australians and Implications for Ethics, Law and Practice.Nola Ries, Elise Mansfield & Rob Sanson-Fisher - 2019 - Journal of Bioethical Inquiry 16 (3):415-429.
    People with dementia have commonly been excluded from research. The adverse impacts of this exclusion are now being recognized and research literature, position statements, and ethics guidelines increasingly call for inclusion of people with dementia in research. However, few published studies investigate the views of potential participants on taking part in research should they experience dementia-related cognitive impairment. This cross-sectional survey examined the views of people aged sixty and older attending hospital outpatient clinics about clinical research participation if they had (...)
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  • Including People with Dementia in Research: An Analysis of Australian Ethical and Legal Rules and Recommendations for Reform.Nola M. Ries, Katie A. Thompson & Michael Lowe - 2017 - Journal of Bioethical Inquiry 14 (3):359-374.
    Research is crucial to advancing knowledge about dementia, yet the burden of the disease currently outpaces research activity. Research often excludes people with dementia and other cognitive impairments because researchers and ethics committees are concerned about issues related to capacity, consent, and substitute decision-making. In Australia, participation in research by people with cognitive impairment is governed by a national ethics statement and a patchwork of state and territorial laws that have widely varying rules. We contend that this legislative variation precludes (...)
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  • Challenges of anticipation of future decisions in dementia and dementia research.Julia Perry - 2022 - History and Philosophy of the Life Sciences 44 (4):1-29.
    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 (...)
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  • Dementia research and advance consent: it is not about critical interests.Karin Rolanda Jongsma & Suzanne van de Vathorst - 2015 - Journal of Medical Ethics 41 (8):708-709.
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  • Beyond competence: advance directives in dementia research.Karin Roland Jongsma & Suzanne van de Vathorst - 2015 - Monash Bioethics Review 33 (2-3):167-180.
    Dementia is highly prevalent and incurable. The participation of dementia patients in clinical research is indispensable if we want to find an effective treatment for dementia. However, one of the primary challenges in dementia research is the patients’ gradual loss of the capacity to consent. Patients with dementia are characterized by the fact that, at an earlier stage of their life, they were able to give their consent to participation in research. Therefore, the phase when patients are still competent to (...)
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  • Advance research directives: avoiding double standards.Bert Heinrichs - 2021 - BMC Medical Ethics 22 (1):1-8.
    BackgroundAdvance research directives (ARD) have been suggested as a means by which to facilitate research with incapacitated subjects, in particular in the context of dementia research. However, established disclosure requirements for study participation raise an ethical problem for the application of ARDs: While regular consent procedures call for detailed information on a specific study (“token disclosure”), ARDs can typically only include generic information (“type disclosure”). The introduction of ARDs could thus establish a double standard in the sense that within the (...)
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  • Tom Buller on the principle of precedent autonomy and the relation between critical and experiential interests.Oliver Hallich - 2015 - Journal of Medical Ethics 41 (8):709-711.
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  • Posthumous autonomy: Agency and consent in body donation.Tom Farsides & Claire F. Smith - forthcoming - Philosophical Psychology.
    Six people were interviewed about the possibility of becoming posthumous body donors. Interview transcripts were analyzed using interpretative phenomenological analysis. Individual-level analysis suggested a common interest in Personhood Concerns and a common commitment to Enlightenment Values. Investigations of these possible themes across participants resulted in identification of two sample-level themes, each with two subthemes: Autonomy, with subthemes of agency and consent, and Rationality, with subthemes of knowledge/epistemology and materialism/ontology. This paper concentrates on the former. Consent for posthumous body donation was (...)
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  • Advance Research Directives in Germany: A Proposal for a Disclosure Standard.Matthé Scholten - 2018 - GeroPsych: The Journal of Gerontopsychology and Geriatric Psychiatry 31 (2):77-86.
    The fourth amendment to the German Medicinal Products Act (Arzneimittelgesetz) states that nontherapeutic research in incompetent populations is permissible under the condition that potential research participants expressly declare their wish to participate in scientific research in an advance research directive. This article explores the implementation of advance research directives in Germany against the background of the international legal and ethical framework for biomedical research. In particular, it addresses a practical problem that arises from the disclosure requirement for advance research directives. (...)
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