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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Research ethics in the Kalahari: issues, contradictions and concerns (Papers: Keyan Tomaselli | 2017)0

Posted by Admin in on September 6, 2018
 

Abstract
The effects of ethical clearance or institutional review board practices are discussed in relation to the experiences of academic field researchers on the one hand and indigenous research participants and/or co-generators of knowledge on the other. Ethical procedures such as protection (do no harm), control (micromanaging methods) and exploitation (taking ownership) are discussed in relation to researcher experiences in southern Africa. Researcher–researched relations, researcher and subject alienation, ethics creep and the clash of ontologies are examined. Some tentative solutions are proposed.

Keywords: ethics, gatekeepers, indigenous rights, institutional review board, Kalahari, ≠Khomani Bushmen

Tomaselli, K.G. (2017): Ethical Procedures? A Critical Intervention: The sacred, the profane, and the planet. The Ethnographic Edge, [S.l.], v. 1, n. 1, p. 3-16.
Publisher: https://www.tandfonline.com/doi/abs/10.1080/02560046.2016.1267253

Research with, not about, communities – Ethical guidance towards empowerment in collaborative research, a report for the TRUST project – TRUST (Kate Chatfield, et al | July 2018)0

Posted by Admin in on August 28, 2018
 

Executive Summary and Introduction
Community engagement is an ethical imperative (a ‘must’) for researchers operating globally. Research participants, their local communities and research partners in international locations should be equal stakeholders1 in the pursuit of research-related gains.2,3

Great TRUST paper about a more respectful approach to research with communities. We have included links to a treasure trove of papers, reports, blog posts and news items on matters around the topics discussed in this paper.

In the 1990s, community engagement became prominent as the new guiding light of public health efforts. Involving communities in research and health-improvement programs led to better results than government-led programs alone.4 At the same time, the emerging need to protect indigenous communities in genetic research led Canadian Charles Weijer to demand a fifth principle in bioethics5,6: protection for communities.7 The individualistic nature of existing research ethics principles, stemming from US origins with its traditional emphasis upon individual autonomy was thus questioned. Asian and African ethicists added their voices to highlight the importance of respect for communities, as well as individuals.8,9
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This report provides guidance on community engagement in research from the perspective of the four TRUST values: fairness, respect, care and honesty.
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These values were identified by a global group of experts as the cornerstones of equitable research partnerships between high-income country (HIC) and low- and middle-income country (LMIC) research partners in any discipline10. The group included representatives from two vulnerable populations that carry a high burden of research: Kenyan sex workers and San indigenous peoples of Southern Africa. The guidance is suitable for all who support vulnerable populations involved in research projects, including civil society organisations, whether or not they are carrying out the research projects themselves.
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Chatfield, K. et al. (2018) Research with, not about, communities – Ethical guidance towards empowerment in collaborative research, a report for the TRUST project.  http://trust-project.eu/wp-content/uploads/2018/07/TRUST-Community-Participation-in-Research-Final.pdf

Sensitive Data can be Shared (Michael Martin | 2014)0

Posted by Admin in on August 9, 2018
 

A discussion of the legal and ethical context of publishing and sharing sensitive data with two experts who contributed to the ANDS Guide to Publishing & Sharing Sensitive Data.

Provides practical advice about sharing human data as part of ethical research practice (YouTube, 40 min) Baden Appleyard, Barrister, also offers insight into legal requirements.

Martin, M (2014) Sensitive Data can be Shared.
https://www.youtube.com/watch?v=FopQez8P-lU&feature=youtu.be

Vulnerable patients – easy targets for companies willing to sacrifice ethics for profits – The Hill (Jody Lyneé Madeira | May 2018)0

Posted by Admin in on August 5, 2018
 

A small medical device has just become embroiled in a large controversy, suggesting violations of fundamental ethical norms and settled principles of scientific research.

Stories like this highlight why people living with a chronic medical condition (and their families) need to be discerning and cautious when it comes to glowing media reports about amazing new treatments.

At first glance, the Bridge — a neuro-modulation device that attaches behind the ear — resembles a hearing aid with wires. The Bridge received Food and Drug Administration (FDA) clearance in November 2017 for easing opioid withdrawal symptoms during detoxification; before, it was approved only for acupuncture.
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This device is supposed to help patients get through the difficult opioid withdrawal process. It’s used in pilot programs in several states, available in at least one major Indiana hospital chain, and is starting to be covered by insurance.
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