ACN - 101321555 Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Resource Library

Research Ethics MonthlyAbout Us

ResourcesProtection for participants

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Vulnerability in Research Ethics: a Way Forward (Papers: Margaret Meek Lange, et al | 2013)0

Posted by Admin in on November 30, 2018
 

Abstract
Several foundational documents of bioethics mention the special obligation researchers have to vulnerable research participants. However, the treatment of vulnerability offered by these documents often relies on enumeration of vulnerable groups rather than an analysis of the features that make such groups vulnerable. Recent attempts in the scholarly literature to lend philosophical weight to the concept of vulnerability are offered by Luna and Hurst. Luna suggests that vulnerability is irreducibly contextual and that Institutional Review Boards (Research Ethics Committees) can only identify vulnerable participants by carefully examining the details of the proposed research. Hurst, in contrast, defines the vulnerable as those especially at risk of incurring the wrongs to which all research ethics participants are exposed. We offer a more substantive conception of vulnerability than Luna but one that gives rise to a different rubric of responsibilities from Hurst’s. While we understand vulnerability to be an ontological condition of human existence, in the context of research ethics, we take the vulnerable to be research subjects who are especially prone to harm or exploitation. Our analysis rests on developing a typology of sources of vulnerability and showing how distinct sources generate distinct obligations on the part of the researcher. Our account emphasizes that the researcher’s first obligation is not to make the research participant even more vulnerable than they already are. To illustrate our framework, we consider two cases: that of a vulnerable population involved in international research and that of a domestic population of people with diminished capacity.

Keywords
Vulnerability, Research ethics, Alzheimer’s Disease, Tenofovir case

Lange, M. M., Rogers, W. and Dodds, S. (2013), Vulnerability in Research Ethics: A Way Forward. Bioethics, 27: 333-340. doi:10.1111/bioe.12032
Publiher (PDF available): https://onlinelibrary.wiley.com/doi/abs/10.1111/bioe.12032

Patients find misleading information on the internet – The Ethics Blog (Pär Segerdahl | October 2018)0

Posted by Admin in on November 25, 2018
 

In phase 1 clinical studies of substances that might possibly be used to treat cancer in the future, cancer patients are recruited as research participants. These patients almost always have advanced cancer that no longer responds to the standard treatment.

That research participation would affect the cancer is unlikely. The purpose of a phase 1 study is to determine safe dosage range and to investigate side effects and other safety issues. This will then enable proceeding to investigating the effectiveness of the substance on specific forms of cancer, but with other research participants.

Given that patients often seek online information on clinical trials, Tove Godskesen, Josepine Fernow and Stefan Eriksson wanted to investigate the quality of the information that currently is available on the internet about phase 1 clinical cancer trials in Sweden, Denmark and Norway.

Read the rest of this discussion piece

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

Ethical relationships, ethical research in Aboriginal contexts: Perspectives from central Australia0

Posted by Admin in on November 18, 2018
 

Learning Communities International Journal of Learning in Social Contexts
Special issue: Ethical relationships, ethical research in Aboriginal contexts: Perspectives from central Australia

Number 23 – November 2018

CONTENTS
Introduction to Special Issue: Being here matters …2
Barry Judd

Editorial….12
Al Strangeways

“You helped us and now we’re going to all help you”: What we learned about how to do research together …16
Lisa Hall, Linda Anderson, Fiona Gibson, Mona Kantawara, Barbara Martin and Yamurna Oldfield

Ngapartji ngapartji ninti and koorliny karnya quoppa katitjin (Respectful and ethical research in central Australia and the south west) …32
Jennie Buchanan, Len Collard and Dave Palmer

Researching together: Reflections on ethical research in remote Aboriginal communities …52
Tessa Benveniste and Lorraine King

The dancing trope of cross-cultural language education policy…64
Janine Oldfield and Vincent Forrester

Different monsters: Traversing the uneasy dialectic of institutional and relational ethics …76
Al Strangeways and Lisa Papatraianou

Research for social impact and the contra-ethic of national frameworks…92
Judith Lovell Altyerre

NOW: Arrernte dreams for national reconstruction in the 21st century …106
Joel Liddle Perrurle and Barry Judd

The making of Monstrous Breaches: An ethical global visual narrative…116
Judith Lovell and Kathleen Kemarre Wallace

Read  the special edition

0