ArticleThe American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry2013
Public's approach to surrogate consent for dementia research: cautious pragmatism.
Article in The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
19 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Pooled it
- Informed consent in dental care and research for the older adult population: A systematic review.Journal of the American Dental Association (1939) · 2017Pooled it
- Proxy decision-making about participation in palliative care research: A scoping review.Palliative medicine · 2026Article
- A randomized implementation trial to increase adoption of evidence-informed consent practices.Journal of clinical and translational science · 2023Article
- Reconciling communication repertoires: navigating interactions involving persons with severe/profound intellectual disability, a classic grounded theory study.Journal of intellectual disability research : JIDR · 2022Article
- Reconsidering Gold Standards for Surrogate Decision Making for People with Dementia.The Psychiatric clinics of North America · 2021Review
- Resources, methods, and data infrastructure to promote research in dementia care, caregiving, and services.Journal of the American Geriatrics Society · 2021Review
- Perceived protectiveness of research safeguards and influences on willingness to participate in research: A novel MTurk pilot study.Journal of psychiatric research · 2021Article
- Motivations for people with cognitive impairment to complete an advance research directive - a qualitative interview study.BMC psychiatry · 2020Article
- Informed consent, therapeutic misconception, and clinical trials for Alzheimer's disease.International journal of geriatric psychiatry · 2020Article
- Impact of Cognitive Impairment Across Specialties: Summary of a Report From the U13 Conference Series.Journal of the American Geriatrics Society · 2019Article
- Article
- Article
- Public's Views toward Return of Secondary Results in Genomic Sequencing: It's (Almost) All about the Choice.Journal of genetic counseling · 2017Article
- Phase 1 healthy volunteer willingness to participate and enrollment preferences.Clinical trials (London, England) · 2017Article
- Including People with Dementia in Research: An Analysis of Australian Ethical and Legal Rules and Recommendations for Reform.Journal of bioethical inquiry · 2017Article
- Assessing capacity to consent for research in cognitively impaired older patients.Clinical interventions in aging · 2017Review
- European Society for Swallowing Disorders - European Union Geriatric Medicine Society white paper: oropharyngeal dysphagia as a geriatric syndrome.Clinical interventions in aging · 2016Review
- Informed Consent to Research with Cognitively Impaired Adults: Transdisciplinary Challenges and Opportunities.Clinical gerontologistReview
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
Abstract
objectivesTo describe how members of the older general public deliberate with one another in finding solutions to the dilemma of involving persons with decisional incapacity in dementia research. DESIGN, SETTING, AND
participantsOne hundred sixty persons age 50 years and older who participated in an all-day deliberative democracy session on the ethics of surrogate consent for dementia research. The deliberative democracy day consisted of both extensive, interactive education with experts in clinical research and ethics, as well as small group deliberations. MEASUREMENTS: Audiotaped small group deliberations were transcribed and analyzed and the main thematic elements were coded.
resultsDuring deliberation, participants acknowledged the limitations of advanced research directives and discussed ways to improve their use. Although there was consensus about the necessity of surrogate consent, the participants recognized potential pitfalls and looked for ways to safeguard the process. Participants supporting surrogate consent for research emphasized societal and individual benefits, the importance of assent, and trust in surrogates and the oversight system. Other participants felt that the high risk of some research scenarios was not sufficiently offset by benefits to patients or society.
conclusionsMembers of the older general public are able to make use of in-depth education and peer deliberation to provide reasoned and informed opinions on the ethical use of surrogate consent for dementia research. The public's approach to surrogate consent is one of cautious pragmatism: an overall trust in science and future surrogates with awareness of the potential pitfalls, suggesting that their trust cannot be taken for granted.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.