ArticleJournal of bioethical inquiry2017
Including People with Dementia in Research: An Analysis of Australian Ethical and Legal Rules and Recommendations for Reform.
Article in Journal of bioethical inquiry, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
15 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Methods and approaches to facilitate inclusion of the views, perspectives and preferences of people with moderate-to-severe dementia in research: A narrative systematic review.International journal of older people nursing · 2024Pooled it
- The full spectrum of ethical issues in dementia research: findings of a systematic qualitative review.BMC medical ethics · 2021Pooled it
- Understanding the Unique Ethical Challenges in Randomized Controlled Trials of Delirium Interventions for Older Adults: A Rapid Review.Anesthesia and analgesia · 2026Review
- My new home: study protocol for a prospective cohort study on the long-term personality development and short-term processes during transitions into nursing homes.BMC geriatrics · 2025Article
- 'It's not making a decision, it's prompting the discussions': a qualitative study exploring stakeholders' views on the acceptability and feasibility of advance research planning (CONSULT-ADVANCE).BMC medical ethics · 2024Article
- Expanding the ethnographic toolkit: Using medical documents to include kinless older adults living with dementia in qualitative research.Journal of aging studies · 2023Article
- Article
- Participants' Comprehension of the Informed Consent in an Epidemiological Study on Dementia Prevalence: A Qualitative Study.Frontiers in psychiatry · 2021Article
- Article
- Advances and challenges in conducting ethical trials involving populations lacking capacity to consent: A decade in review.Contemporary clinical trials · 2020Article
- Article
- Planning Ahead for Dementia Research Participation: Insights from a Survey of Older Australians and Implications for Ethics, Law and Practice.Journal of bioethical inquiry · 2019Article
- A 450 Year Old Turkish Poem, Art as a Qualitative Investigation Tool, Buddhist Deathways, Karma and Eudaimonia in Death and Organ Donation: The Wonders of Truly Diverse Bioethical Inquiry!Journal of bioethical inquiry · 2017Article
- Ethical and Methodological Considerations for Evaluating Participant Views on Alzheimer's and Dementia Research.Journal of empirical research on human research ethics : JERHREArticle
- If Human Brain Organoids Are the Answer to Understanding Dementia, What Are the Questions?The Neuroscientist : a review journal bringing neurobiology, neurology and psychiatryReview
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
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 a consistent approach to research governance and participation and hinders research that seeks to include people with impaired capacity. In this paper, we present key ethical principles, provide a comprehensive review of applicable legal rules in Australian states and territories, and highlight significant differences and ambiguities. Our analysis includes recommendations for reform to improve clarity and consistency in the law and reduce barriers that may exclude persons with dementia from participating in ethically approved research. Our recommendations seek to advance the national decision-making principles recommended by the Australian Law Reform Commission, which emphasize the rights of all adults to make their own decisions and for those with impaired capacity to have access to appropriate supports to help them make decisions that affect their lives.
Indexed as
Identifiers
28634767What 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.