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

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

Research ethics, informed consent and the disempowerment of First Nation peoples (Papers: Juan M Tauri | 2017)0

Posted by Admin in on November 14, 2018
 

Abstract
Recently, Indigenous commentators have begun to analyse the way in which institutional Research Ethics Boards (REBs) engage with Indigenous researchers and participants, respond to Indigenous peoples’ concerns with academic research activities, and scrutinise the ethics proposals of Indigenous scholars. Of particular concern for Indigenous commentators is that the work of REBs often results in the marginalisation of Indigenous approaches to knowledge construction and dissemination, especially in relation to the vexed issue of informed consent. Based on analysis of the results of research with Indigenous researchers and research participants, this paper argues that institutionalised REBs’ preference for ‘universal’ and ‘individualised’ approaches for determining ethical research conduct marginalises Indigenous approaches to ethical research conduct. The paper concludes by calling for a decolonisation of REB processes through recognition of the validity of communal processes for attaining the informed consent of Indigenous research participants.

Keywords First Nations, research ethics boards, informed consent, decolonisation

Tauri, J. M. (2018). Research ethics, informed consent and the disempowerment of First Nation peoples. Research Ethics, 14(3), 1–14. https://doi.org/10.1177/1747016117739935
Publisher (Open Access): https://journals.sagepub.com/doi/full/10.1177/1747016117739935

(Egypt) Debate over misconduct stalls Egyptian clinical trials law – Sci Dev Net (Hazem Badr | October 2018)0

Posted by Admin in on November 11, 2018
 

[Cairo] Egypt’s president Abdel Fattah El-Sisi has declined to sign the country’s clinical trials law into action, after objecting to parts that, he said, might violate the human body.

Despite the delays with the Egyptian new clinical trials law, with its legal penalties for failure to meet human research ethics and research integrity standards there are indications and commentary that suggest the delay reflects a political engagement many of us would like to see in our own countries.

According to researchers following the law’s creation, Sisi returned seven amendments to the law, which could delay its creation. For example, articles 28, 29 and 32 of the law have been amended to reduce the severity of proposed prison terms for misconduct, such as using human samples without informed consent.
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But the scientists following the law’s creation are positive about the president’s response, saying that his amendments show he is engaging with the matter and keen to see the law signed into life. “The president’s comments address the complex equation of respecting the sacredness of the human body and, at the same time, endorsing scientific research,” said Mahmoud Sakr, the director of Egypt’s Academy of Scientific Research and Technology.
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“The text [as it stands] contradicts our goal of motivating universities to pursue joint research and hinders the exploration of samples using advanced equipment that might not be available locally,”
……Abdel Fattah El-Sisi, Egypt’s president
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Read the rest of this discussion piece

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