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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Indigenous peoples and the morality of the Human Genome Diversity Project (Paper: Michael Dodson, Robert Williams 1999)0

Posted by Admin in on May 31, 2015
 

PAPER: Dodson, M., & Williamson, R. (1999). Indigenous peoples and the morality of the Human Genome Diversity Project. Journal of Medical Ethics, 25(2), 204-208.

ABSTRACT
In addition to the aim of mapping and sequencing one human’s genome, the Human Genome Project also intends to characterise the genetic diversity of the world’s peoples. The Human Genome Diversity Project raises political, economic and ethical issues. These intersect clearly when the genomes under study are those of indigenous peoples who are already subject to serious economic, legal and/or social disadvantage and discrimination. The fact that some individuals associated with the project have made dismissive comments about indigenous peoples has confused rather than illuminated the deeper issues involved, as well as causing much antagonism among indigenous peoples. There are more serious ethical issues raised by the project for all geneticists, including those who are sympathetic to the problems of indigenous peoples. With particular attention to the history and attitudes of Australian indigenous peoples, we argue that the Human Genome Diversity Project can only proceed if those who further its objectives simultaneously: respect the cultural beliefs of indigenous peoples; publicly support the efforts of indigenous peoples to achieve respect and equality; express respect by a rigorous understanding of the meaning of equitable negotiation of consent, and ensure that both immediate and long term economic benefits from the research flow back to the groups taking part.

Genetic Research in Aboriginal and Torres Strait Islander Communities: Beginning the Conversation (Paper: Emma Kowal et al 2011)0

Posted by Admin in on May 31, 2015
 

Paper: Kowal, E., Rouhani, L., & Anderson, I. (2011). Genetic research in Aboriginal and Torres Strait Islander communities: Beginning the conversation.

PREFACE (Excerpt):
Genetics is at the forefront of medical research, but it is rarely used in Indigenous health research projects. In the past, proposals to conduct genetic studies in Aboriginal and Torres Strait Islander communities in Australia have been highly criticised and rarely funded. However, genetic researchers worldwide argue that genetics has the potential to reduce health disparities (including Indigenous health disparities) in multiple ways: through understanding disease pathogenesis, using genetics to probe environmental risk, predicting disease risk, finding novel diagnostics and drug targets, and pharmacogenomics.

Understandably, many Indigenous people interpret genetic research in the context of their experiences of colonisation. Multiple fears constitute barriers to effective research partnerships between Indigenous communities and genetic researchers. These concerns include genetic theft or ‘biopiracy’, that genetics will be used to determine Aboriginality and may fuel racism, of poor access to potential health care innovations, of bad experiences of the Human Genome Diversity Project (known by some as the ‘Vampire’ project) and of struggles over access to deoxyribonucleic acid (DNA) extracted from human remains.

 

“De-Colonizing Research Practice: Indigenous Methodologies, Aboriginal Methods, and Knowledge/Knowing”, in Oxford Handbook of Qualitative Research (Chapter: Mike Evans et al 2014).0

Posted by Admin in on May 31, 2015
 

BOOK CHAPTER: Evans, M, Miller, A, Hutchinson, P & Dingwall, C 2014, ‘De-colonizing research practice: indigenous methodologies, Aboriginal methods, and knowledge/knowing’, in P Leavy (ed.), Oxford Handbook of Qualitative Research, Oxford University Press, New York, pp. 179-191. ISBN: 9780199811755

ABSTRACT
Indigenous approaches to research are fundamentally rooted in the traditions and knowledge systems of Indigenous peoples themselves, although Indigenous methodologies and methods have become both systems for generating knowledge and ways of responding to the processes of colonization. Very specific Indigenous methods emerge from language, culture, and worldview. This chapter describes two such Indigenous research approaches drawn from the work of two Indigenous scholars with their communities in Australia and Canada. Although creative and new, these approaches draw deeply from their communities and thus express and enact traditional knowledge systems in contemporary terms. This approach may result in more pertinent research, better take-up and dissemination of research results, and a general improvement in the situations of Indigenous communities and peoples.

Ways of Being and Ways of Doing: a theoretical framework and methods for Indigenous re-search and Indigenist research.. Voicing Dissent, New Talents 21C: Next Generation Australian Studies (Paper: Karen Martin 2003)0

Posted by Admin in on May 31, 2015
 

PAPER: Martin, Karen L. (2003) Ways of Knowing, Ways of Being and Ways of Doing: a theoretical framework and methods for Indigenous re-search and Indigenist research.. Voicing Dissent, New Talents 21C: Next Generation Australian Studies  Journal of Australian Studies, 76, pp. 203-214.

ABSTRACT
In the last decade much has occurred to build towards reforms in the ways qualitative research is constructed and conducted based upon other ways of viewing, creating and experiencing the world. These research spaces are available because of the persistent work and assertion of the cultural and theoretical standpoints of researchers who were once the researched, namely Aboriginal peoples. This paper describes the framework of an Indigenist research paradigm based upon the ontological, epistemological and theoretical positions of my people, the Noonuccal people of Quandamoopah. It provides discussion of the conceptual, cultural and practical tensions that arise within the research interface towards centering Aboriginal worldviews and knowledges as research epistemology and then methodology. This paper is one contribution to the continuing reform of Indigenous research and the reclamation of Indigenous cultural spaces in Australia.

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