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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Genetic research in indigenous health: significant progress, substantial challenges (Paper: Wendy Hoy 2012)0

Posted by Admin in on May 31, 2015
 

PAPER: Hoy, W. E. (2012). Genetic research in indigenous health: significant progress, substantial challenges. Medical Journal of Australia, 197(7), 382-383.

ABSTRACT:
Of all the measurements and biological samples used in health research, it is the extraction and analysis of genetic material that has caused the most controversy in indigenous health research across the globe. No other kind of research has a specific inter- national non-governmental organisation dedicated to opposing it — the Indigenous People’s Council on Biocolonialism. This United States-based organisation was founded in 1999 in the wake of the Human Genome Diversity Project (HGDP). That project was a worldwide effort to collect DNA samples from indigenous populations for population genetic research that aimed to understand the ancient migration of Homo sapiens out of Africa beginning 100 000 years ago, and populating the rest of the world.

Human Genome Diversity: ethics and practice in Australia (Paper: Pellekaan van Holst )0

Posted by Admin in on May 31, 2015
 

PAPERS: PELLEKAAN S, H. (2011). Human Genome Diversity: Ethics and Practice in Australia. Human evolution, 26(3-4), 141-152.

ABSTRACT
Researchers who propose projects about the human past frequently fail to distinguish between scientific value and the impact of both the proposal and the possible outcome for participant groups. It is only in recent years, and still in relatively few cases, that Aboriginal Australians have been directly involved in projects about themselves. The legacy of previous research experiences is a lingering distrust of ‘white’ researchers who visit communities briefly, take material/information, publish papers, and are rarely seen again. This distrust is understandable but in turn becomes a barrier which many well-intentioned researchers are unable or unwilling to overcome. The expectations of the scientific community, particularly in the field of molecular biology, simply do not make allowances in terms of time or funding to build a trusting relationship between the researchers and the researched. Sensitivity to indigenous rights and expectations with regard to scientific research brings obligations to scientific investigators with which few are well prepared to deal. The direct involvement of indigenous people in research about themselves is essential to the development of trusting working relationships likely to result in valuable outcomes for all participants and increased opportunities for ongoing research. Well negotiated, co-operative research can provide information of value to both scientific investigators and local participants, but adequate and ongoing consultation, as well as the return of results to the communities in an accurate and appropriate form must be part of research strategy. For example, information about mitochondrial DNA studies may assist Indigenous Australian people, whose families were dispersed during colonisation by Europeans, to trace links with the past, find ‘stolen children’ and by association with other anthropological, linguistic and archaeological data, repossess some remnants of traditional knowledge, but researchers must ensure that participants have a realistic understanding of the limitations of the research.

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.

 

Please Knock Before You Enter: Aboriginal Regulation of Outsiders and the Implications for Researchers (Karen Martin 2008)0

Posted by Admin in on May 31, 2015
 

BOOK: Martin, K 2008, Please knock before you enter: Aboriginal regulation of outsiders and the implications for researchers, Post Pressed, Teneriffe, Qld. ISBN: 9781921214370

Excerpt:

The regulation of Outsiders to Aboriginal Country is theorised by scholars as invasion and contact, race relations, frontiers and acculturation. In these theories Aboriginal People are represented as powerless and hopeless in the face of their inevitable assimilation. Aboriginal regulation of Outsiders is rarely investigated for Aboriginal agency.

This research study investigates the agency of a Rainforest Aboriginal Community in the regulation of Outsiders to their Country of past, present and future. It provides an Indigenist research paradigm founded on the principles of cultural respect and cultural safety and embedded in Aboriginal ontology, epistemology and axiology.

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