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

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

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)

 


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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



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