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Enhancing the Informed Consent Process in Clinical Dementia Research

Year: 2017
Type: conference-abstract
Abstract: The high number of people suffering from dementia will significantly increase in European countries and elsewhere in the coming decades. No treatments are currently available that can reverse or even halt the neurodegenerative process, and dementia is a considerable burden on patients and caregivers, as well as on societies as a whole. For this reason, there is a substantial need for further medical dementia research. People with dementia have the right to decide whether or not they want to participate in clinical research and to give their free, prior and informed consent. However, as dementia progresses, they can lose their ability to give informed consent to complex medical research because of an increasing loss of cognitive functions. At first sight, it seems ethically problematic to involve dementia patients in research, as people with impaired mental capacity must be protected against the risks of research participation. Furthermore, in contrast to informed consent to medical treatment, an individual benefit from participation in research can rarely be taken for granted. However, people with dementia also have a right to benefit from medical research in particular, so their categorical exclusion would appear to be ethically problematic too. High standards for the informed consent process and a thorough assessment of mental capacity are therefore important for the protection of research participants. In this Symposium, the international, interdisciplinary ENSURE project will be presented. This project aims to contribute towards achieving an adequate balance between autonomy and the protection of dementia patients in clinical research.
DOI: 10.1093/geroni/igx004.2626
Language: English
Field: Medicine
Open Access status: gold
Estimated APC paid: $3,977
OpenAlex ID: W2724699778
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Cited by: 2
Related to: 10