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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Vulnerability in human research (Papers: Ian J. Pieper & Colin J. H. Thomson AM | April 2020)0

Posted by Admin in on April 29, 2020
 

Abstract
The conduct of prior ethics review of human research projects helps to protect vulnerable groups or populations from potential negative impacts of research. Contemporary considerations in human research considers the concept of vulnerability in terms of access to research opportunities, impacts on the consenting process, selection bias, and the generalisability of results. Recent work questions the validity of using enumerated lists as a check box approach to protect research participants from exploitation. Through the use of broad categories to treat cohorts of human research participants as homogenous classes and label some participants as vulnerable merely because they are members of a particular class, some ethics reviewers have used the National Statement on Ethical Conduct in Human Research to strip individuals of their “ethical equality”. Labelling people as vulnerable does not help researchers or human research ethics committee members develop an understanding of the complexities of applying the principles of respect and of justice in ethical decision-making. Conversely, defining specific cohorts of research participants as needing nuanced ethical consideration, due to their vulnerable nature, may imply that other population groups need not be considered vulnerable. We contend that this assumption is erroneous. This paper explores the way that human research ethics guidance documents treat vulnerability within the Australian context and draws on contemporary discussion to focus an alternative perspective based on the principles in the National Statement on Ethical Conduct in Human Research for researchers and human research ethics committee members to consider.

Keywords
Vulnerability, Human Research Ethics, Human Research Ethics Committee (HREC), IRB

Pieper, I.J., Thomson, C.J.H. (2020) Vulnerability in human research. Monash Bioethics Review. https://link.springer.com/article/10.1007/s40592-020-00110-4

Flying Blind – the Australian Health Data Series: The Ethics Quagmire: Case Studies (Uma Srinivasan | August 2017)0

Posted by Admin in on February 17, 2020
 

Flying Blind is a series of three reports dedicated to uncovering the acute levels of data fragmentation existing at all levels of Australia’s health landscape.

In Flying Blind 2, we have been highlighting the tortuous route of the researcher’s journey, as they negotiate the ethics processes and the myriad data sources required for their research. In the next few blogs, Australian health and medical researchers who have been through the journey, present real-life case studies and  back-of-the-envelope calculations of what it takes to identify existing data sets and negotiating the ethics processes, to link the data sets to support their research.

What is sad for Australian health research is that these numbers do not reflect reseachers’ time spent in actually performing research!

We hope the case studies will shine a light on the complexities and the lack of efficiency and transparency around tapping into de-identified pre-existing administrative data sets from multiple states and federal health data sources.

Read the rest of this discussion piece

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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

Constructive Voices: Panel discussion about institutional implementation of the National Statement (2007 updated 2018)0

Posted by Admin in on November 24, 2018
 

On 22nd of november, AHRECS hosted its second Constructive Voices panel. These panels aim to create an opportunity for open discussion about human research ethics and research integrity among researchers, policymakers, research managers, research ethics reviewers and other stakeholders.

The first panel featured:

  • Jeremy Kenner, Expert Advisor – Ethics at NHMRC
  • Wendy Rogers, Chair NSWG, Macquarie University
  • Pamela Henry, Chair ECU HREC
  • Gary Allen, Co-Chair Chapter 3.1 drafting committeer,  Senior Consultant, AHRECS

A video-recording of the discussion will be available for streaming for 90 days for free from the here. It will then be moved to the AHRECS subscribers’ area.

By becoming a subscriber (from USD1/month) you will not only gain access to a growing library of high-quality resources (two or more items are added every month), but you will also be supporting events like the Constructive Voices panel discussions. A subscription of USD15/month provides access to all the materials.

We are also happy to hear ideas for panels and speakers for 2019. We agree that there is a need for communities of practice to develop further around research ethics. We recognise that AHRECS could do more to stimulate this and we would like to find partners who would resource this.

AHRECS has been working with Australian universities and other research institutions to respond to the recent changes to the National Statement and the new Australian Code. You can find out more about the services offered by AHRECS at https://ahrecs.com/our-services.

Regards from Mark, Gary and Colin on behalf of the AHRECS team

Items left by the speakers

Mark’s welcome and intro slides

— NHMRC —

Jeremy’s presentation slides

Jeremy’s full version slides

National Statement on Ethical Conduct in Human Research (2007 Updated 2018)

— WENDY ROGERS —

Wendy’s presentation

— PAMELA HENRY —

Pamela’s presentation

— GARY ALLEN —

Gary’s slides

Recording of event

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