Human genome diversity: Ethics and practice in Australia |
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Authors: | Holst Pellekaan S van |
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Institution: | (1) Department of Life Sciences in Nursing, University of Sydney, 2006, Australia |
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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. |
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Keywords: | Australian abotigen Huma Genome Research Ethics |
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