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The current model of ethical governance in research involving humans in the social sciences and humanities relies on prospective ethics review in ensuring that research in conducted ethically. One of its key features is distrust to researchers and their initiatives regardless of the subject matter, discipline, research methodology or settings, sources of funding, or researcher's experience. This article discusses the New Brunswick Declaration on Research Ethics adopted by the participants of the Ethics Rupture: Alternatives to Research-Ethics Review Summit in 2013. In particular, it provides background for the regulatory capture of the social sciences by the biomedical institutions of ethics review. It concludes by examining the limitations of the Declaration, and offers a set of principles for the development of the New Brunswick Declaration following its discussion at the Ethics in Practice: Tensions around Ethics Review and Maori Consultation Conference at the University of Otago in Dunedin in May 2015.
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Addressing Indigenous rights and interests in genetic resources has become increasingly challenging in an open science environment that promotes unrestricted access to genomic data. Although Indigenous experiences with genetic research have been shaped by a series of negative interactions, there is increasing recognition that equitable benefits can only be realized through greater participation of Indigenous communities. Issues of trust, accountability and equity underpin Indigenous critiques of genetic research and the sharing of genomic data. This Perspectives article highlights identified issues for Indigenous communities around the sharing of genomic data and suggests principles and actions that genomic researchers can adopt to recognize community rights and interests in data.
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