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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

The Ethical Quandary of Human Infection Studies – Undark (Linda Nordling | November 2018)0

Posted by Admin in on December 4, 2018
 

Sometimes infecting volunteers with a disease can lead to new treatments. But how much risk and compensation is acceptable for those in poor nations

IN FEBRUARY OF last year, 64 healthy adult Kenyans checked into a university residence in the coastal town of Kilifi. After a battery of medical tests, they proceeded, one by one, into a room where a doctor injected them with live malaria parasites. Left untreated, the infection could have sickened or even killed them, since malaria claims hundreds of thousands of lives every year.

This excellent piece about researchers from affluent countries conducting ‘infection studies’ in poor countries raises issues you might not have considered.

But the volunteers — among them casual laborers, subsistence farmers, and young mothers from nearby villages — were promised treatment as soon as infection took hold. They spent the next few weeks sleeping, eating, and socializing together under the watchful eye of scientists, giving regular blood samples and undergoing physical exams. Some grew sick within a couple of weeks, and were treated and cleared of the parasite before being sent home. Those who did not fall ill were treated after three weeks as a precaution and discharged, too.
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As compensation, the volunteers received between $300 and $480 each, or roughly $20 a day, a rate based on the minimum wage for casual laborers in Kenya and the out-of-pocket allowance set for overnight stays by KEMRI, the Kenya Medical Research Institute.
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Read the rest of this discussion piece

Why bioethics needs a concept of vulnerability (Papers: Wendy Rogers, et al | 2012)0

Posted by Admin in on November 30, 2018
 

Abstract
Concern for human vulnerability seems to be at the heart of bioethical inquiry, but the concept of vulnerability is under-theorized in the bioethical literature. The aim of this article is to show why bioethics needs an adequately theorized and nuanced conception of vulnerability. We first review approaches to vulnerability in research ethics and public health ethics, and show that the bioethical literature associates vulnerability with risk of harm and exploitation, and limited capacity for autonomy. We identify some of the challenges emerging from this literature: in particular, how to reconcile universal human vulnerability with a context-sensitive analysis of specific kinds and sources of vulnerability; and how to reconcile obligations to protect vulnerable persons with obligations to respect autonomy. We then briefly survey some of the theoretical resources available within the philosophical literature to address these challenges, and to assist in understanding the conceptual connections between vulnerability and related concepts such as harm, exploitation, needs, and autonomy. We also sketch out a taxonomy of sources and kinds of vulnerability. Finally, we consider the implications for policy evaluation of making vulnerability an explicit and central focus of bioethics. Our investigation is in the form of a broad survey motivating a research agenda rather than a detailed analysis.

Keywords
Bioethics, Disabilities, Child molestation, Feminism, Public health, Territories, Productivity, Research ethics. Morality, Informed consent

Rogers, W., Mackenzie, C., & Dodds, S. (2012). Why bioethics needs a concept of vulnerability. International Journal of Feminist Approaches to Bioethics, 5(2), 11-38. doi:10.2979/intjfemappbio.5.2.11
Publisher (PDF available with frre login): https://www.jstor.org/stable/10.2979/intjfemappbio.5.2.11?seq=1#metadata_info_tab_contents

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