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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

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.

Consulting research stakeholders in Kenya on fair practice in research data sharing: Findings and policy implications – KEMRI Wellcome Trust Programme (Dr Vicki Marsh | 2015)0

Posted by Admin in on August 4, 2018

With a background in Medicine and General Practice in the UK, Vicki has been working at the KEMRI Wellcome Trust Programme in Kilifi since 1990 and on Health Systems Research and Research Ethics since 1995. Prior to this, between 1982 and 1985, she worked at the UK MRC laboratories in The Gambia. She holds an appointment as a University Research Lecturer in the Nuffield Department of Medicine, and is a Research Associate of the Ethox Centre (Centre for Ethics) in the Public Health Department, at Oxford University. Broadly, Vicki’s current research and operational interests concern understanding, and strengthening policy around, social and ethical aspects of international collaborative health research conducted in low-income settings. Specific areas of focus include community engagement, informed consent, benefit sharing, provider-patient communication, ancillary care responsibilities and data sharing. This, and other, video seminars can be accessed on The Global Health Network’s Training Centre:…

Watch the YouTube video

Marsh, V (2015) Consulting research stakeholders in Kenya on fair practice in research data sharing: Findings and policy implications.

Dr Vicki Marsh, Senior Researcher in Social Science and Public Health at the KEMRI Wellcome Trust Research Programme in Kenya, Associate Professor at the Centre for Tropical Medicine and Global Health in NDM and Research Associate at the Ethox Centre in NDPH at Oxford.

Indigenous Data Sovereignty (Books: Edited by Tahu Kukutai and John Taylor | November 2016)0

Posted by Admin in on August 2, 2018

As the global ‘data revolution’ accelerates, how can the data rights and interests of indigenous peoples be secured? Premised on the United Nations Declaration on the Rights of Indigenous Peoples, this book argues that indigenous peoples have inherent and inalienable rights relating to the collection, ownership and application of data about them, and about their lifeways and territories. As the first book to focus on indigenous data sovereignty, it asks: what does data sovereignty mean for indigenous peoples, and how is it being used in their pursuit of self-determination?

The varied group of mostly indigenous contributors theorise and conceptualise this fast-emerging field and present case studies that illustrate the challenges and opportunities involved. These range from indigenous communities grappling with issues of identity, governance and development, to national governments and NGOs seeking to formulate a response to indigenous demands for data ownership. While the book is focused on the CANZUS states of Canada, Australia, Aotearoa/New Zealand and the United States, much of the content and discussion will be of interest and practical value to a broader global audience.

‘A debate-shaping book … it speaks to a fast-emerging field; it has a lot of important things to say; and the timing is right.’ 
— Stephen Cornell, Professor of Sociology and Faculty Chair of the Native Nations Institute, University of Arizona

‘The effort … in this book to theorise and conceptualise data sovereignty and its links to the realisation of the rights of indigenous peoples is pioneering and laudable.’ 
— Victoria Tauli-Corpuz, UN Special Rapporteur on the Rights of Indigenous Peoples, Baguio City, Philippines

Kukutai, T and Taylor, J (2016) Indigenous Data Sovereignty: Toward an agenda. ANU Press.

Publisher (Free to download):

Conducting Research with Tribal Communities: Sovereignty, Ethics, and Data-Sharing Issues (Papers: Anna Harding, et al | 2011)0

Posted by Admin in on July 17, 2018


Background: When conducting research with American Indian tribes, informed consent beyond conventional institutional review board (IRB) review is needed because of the potential for adverse consequences at a community or governmental level that are unrecognized by academic researchers.

Objectives: In this article, we review sovereignty, research ethics, and data-sharing considerations when doing community-based participatory health–related or natural-resource–related research with American Indian nations and present a model material and data-sharing agreement that meets tribal and university requirements.

Discussion: Only tribal nations themselves can identify potential adverse outcomes, and they can do this only if they understand the assumptions and methods of the proposed research. Tribes must be truly equal partners in study design, data collection, interpretation, and publication. Advances in protection of intellectual property rights (IPR) are also applicable to IRB reviews, as are principles of sovereignty and indigenous rights, all of which affect data ownership and control.

Conclusions: Academic researchers engaged in tribal projects should become familiar with all three areas: sovereignty, ethics and informed consent, and IPR. We recommend developing an agreement with tribal partners that reflects both health-related IRB and natural-resource–related IPR considerations.

Keywords: American Indian, data sharing, informed consent, intellectual property, IRB, research ethics, sovereignty, tribal

Harding A, Harper B, Stone D, O’Neill C, Berger P, et al. (2011) Conducting Research with Tribal Communities: Sovereignty, Ethics, and Data-Sharing Issues. Environmental Health Perspectives.  120: 6–10. pmid:21890450
Publisher (Open Access):