Including People with Dementia in Research: An Analysis of Australian Ethical and Legal Rules and Recommendations for Reform

Ries, NM; Thompson, KA; Lowe, M

Including People with Dementia in Research: An Analysis of Australian Ethical and Legal Rules and Recommendations for Reform

Ries, NM

Thompson, KA Lowe, M

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Publication Type:: Journal Article
Citation:: Journal of Bioethical Inquiry, 2017, 14 (3), pp. 359 - 374
Issue Date:: 2017-09-01

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Field	Value	Language
dc.contributor.author	Ries, NM https://orcid.org/0000-0002-5264-6722	en_US
dc.contributor.author	Thompson, KA	en_US
dc.contributor.author	Lowe, M	en_US
dc.date.available	2016-12-29	en_US
dc.date.issued	2017-09-01	en_US
dc.identifier.citation	Journal of Bioethical Inquiry, 2017, 14 (3), pp. 359 - 374	en_US
dc.identifier.issn	1176-7529	en_US
dc.identifier.uri	http://hdl.handle.net/10453/127950
dc.description.abstract	© 2017, Journal of Bioethical Inquiry Pty Ltd. 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.	en_US
dc.relation.ispartof	Journal of Bioethical Inquiry	en_US
dc.relation.isbasedon	10.1007/s11673-017-9794-9	en_US
dc.subject.classification	Applied Ethics	en_US
dc.subject.mesh	Humans	en_US
dc.subject.mesh	Dementia	en_US
dc.subject.mesh	Mental Competency	en_US
dc.subject.mesh	Decision Making	en_US
dc.subject.mesh	Personal Autonomy	en_US
dc.subject.mesh	Research	en_US
dc.subject.mesh	Patient Selection	en_US
dc.subject.mesh	Informed Consent	en_US
dc.subject.mesh	Ethical Analysis	en_US
dc.subject.mesh	Ethics, Research	en_US
dc.subject.mesh	Principle-Based Ethics	en_US
dc.subject.mesh	Research Subjects	en_US
dc.subject.mesh	Australia	en_US
dc.subject.mesh	Cognitive Dysfunction	en_US
dc.title	Including People with Dementia in Research: An Analysis of Australian Ethical and Legal Rules and Recommendations for Reform	en_US
dc.type	Journal Article
utslib.citation.volume	3	en_US
utslib.citation.volume	14	en_US
utslib.for	1801 Law	en_US
utslib.for	2201 Applied Ethics	en_US
utslib.for	2203 Philosophy	en_US
pubs.embargo.period	Not known	en_US
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Law
pubs.organisational-group	/University of Technology Sydney/Strength - HJ - Health Justice
utslib.copyright.status	open_access
pubs.issue	3	en_US
pubs.publication-status	Published	en_US
pubs.volume	14	en_US

Abstract:

© 2017, Journal of Bioethical Inquiry Pty Ltd. 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.

Please use this identifier to cite or link to this item:

http://hdl.handle.net/10453/127849