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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

(Australia Queensland case) Universal Medicine research conducted by devotees won’t be pulled by Queensland uni – ABC (Josh Robertson | March 2019)0

Posted by Admin in on March 25, 2019
 

A top Australian university has stood by studies into the health benefits of a group that a jury found was a “dangerous cult” making false healing claims, despite its own medical researchers failing to disclose they were devotees.

The investigation finding, as reported by the ABC, isn’t the most bewildering/troubling element of this case – but it’s pretty close.

A 10-month investigation by the University of Queensland (UQ) has cleared the researchers of academic misconduct despite finding they did not fully detail their involvement with Universal Medicine (UM).
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The studies were published in overseas journals and explored the benefits of UM treatments including “esoteric breast massage” and proposed clinical studies in Vietnamese hospitals that would be forbidden in Australia.
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Read the rest of this discussion piece

Political Research and Human Research Ethics Committees (Papers: Anthony J. Langlois | 2011)0

Posted by Admin in on February 5, 2019
 

Human Research Ethics Committees have become an established part of the institutional structure of research in the humanities and social sciences over the last two decades in Australia, a development which many in the political disciplines have regarded with ambiguity or outright hostility. My purpose is to consider some of the particular problems which arise for the political disciplines from the form of research ethics review which has become institutionalised in Australia, and to suggest some reforms which would significantly ameliorate these problems.

My argument is that the conceptual framework on which research ethics review is built, and consequently the institutional model by which ethical review is applied within Australian universities is not appropriate to some forms of political research, with serious detrimental consequences. These consequences may include, but are not limited to: research findings being potentially skewed; research going underground or being undertaken in ways which diverge from what has been approved by committees; self censorship; disengagement with institutional research governance procedures; the generation of risk for researchers who are operating outside institutional approvals because they feel they “have to”; the construction of unnecessary prejudice against the legitimate aims of research ethics review procedures; and, finally, and most disturbingly, important and legitimate research not being undertaken.

Raise the issue of research ethics with a politics researcher in the hallways of any Australian university, and you are likely to meet with a litany of complaints which match in some measure or another my list above. Being a politics academic and – until recently -­‐ the chair of a university wide human research ethics committee, has been an interesting experience; one which has led me to offer the following analysis and suggestions for reform.

Anthony J. Langlois (2011) Political Research and Human Research Ethics Committees. Australian Journal of Political Science, 46:1, 141-156, DOI: 10.1080/10361146.2010.544287
Publisher https://www.tandfonline.com/doi/abs/10.1080/10361146.2010.544287?journalCode=cajp20
ResearchGate: https://www.researchgate.net/publication/263224002_Political_Research_and_Human_Research_Ethics_Committees

The picture talk project: Aboriginal community input on consent for research (Papers: Emily FM Fitzpatrick, et al | 2019)0

Posted by Admin in on February 3, 2019
 

Abstract

Background
The consent and community engagement process for research with Indigenous communities is rarely evaluated. Research protocols are not always collaborative, inclusive or culturally respectful. If participants do not trust or understand the research, selection bias may occur in recruitment, affecting study results potentially denying participants the opportunity to provide more knowledge and greater understanding about their community. Poorly informed consent can also harm the individual participant and the community as a whole.

Methods
Invited by local Aboriginal community leaders of the Fitzroy Valley, the Kimberley, Western Australia, The Picture Talk project explores the consent process for research. Focus groups of Aboriginal community members were conducted to establish preferences for methods of seeking individual consent. Transcripts were analysed through NVivo10 Qualitative software using grounded theory with inductive and deductive coding. Themes were synthesised with quotes highlighted.

Results
Focus groups with Aboriginal community members (n = 6 focus groups of 3–7 participants) were facilitated by a Community Navigator as a cultural guide and interpreter and a researcher. Participants were recruited from all main language groups of the Fitzroy Valley – Gooniyandi, Walmajarri, Wangkatjungka, Bunuba and Nikinya. Participants were aged ≥18 years, with 5 female groups and one male group. Themes identified include: Reputation and trust is essential; The Community Navigator is key; Pictures give the words meaning – milli milli versus Pictures; Achieving consensus in circles; Signing for consent; and Research is needed in the Valley.

Conclusion
Aboriginal communities of the Fitzroy Valley recommend that researchers collaborate with local leaders, develop trust and foster a good reputation in the community prior to research. Local Aboriginal researchers should be employed to provide cultural guidance throughout the research process and interpret local languages especially for elders. Pictures are preferred to written text to explain research information and most prefer to sign for consent. The Fitzroy Valley welcomes research when collaborative and for the benefit of the community. Future research could include exploring how to support young people, promote health screening and improve understanding of medical knowledge.

Keywords
Research, Consent, Qualitative Methods, Aboriginal, Indigenous, Community, Focus Groups, Pictures, Yarning

Fitzpatrick EFM, Carter M, Oscar J, D’Antoine H, Carter M, Lawford T and Elliott EJ (2019) The picture talk project: Aboriginal community input on consent for research. BMC Medical Ethics (2019) 20:12 https://doi.org/10.1186/s12910-019-0349-y
Publisher (Open Access):  https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-019-0349-y

Including People with Dementia in Research: An Analysis of Australian Ethical and Legal Rules and Recommendations for Reform (Papers: Nola M. Ries, et al | 2017)0

Posted by Admin in on January 24, 2019
 

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 decisionmaking 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.

Keywords
Research ethics, Law. Dementia, Consent, Substitute decision-making, Advance directives

Ries, N. M., Thompson KA., & Lowe M. (2017) Including People with Dementia in Research: An Analysis of Australian Ethical and Legal Rules and Recommendations for Reform. Journal of Bioethical Inquiry 14(3): 359-374.
https://link.springer.com/article/10.1007%2Fs11673-017-9794-9