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Researcher Name: Heather Walmsley Project Start Date: Project End Date: Contact Details: h.walmsley@lancaster.ac.uk Funder: ESRC Background: This project will explore the potential of multimedia storytelling to stimulate public engagement with human genomics research, and to democratise debates about ethics and social justice. The implications of human genomics for social justice, and the impacts of a market-driven research agenda upon already-trenchant global health inequalities, are too often neglected in debates about ‘genethics’. Globally, the input of various publics into the direction and governance of genomics is minimal at best. And the perspectives of indigenous and other marginalised peoples are voiced the least - within bioethics and the media. This research aims therefore to: Investigate the perspectives of indigenous peoples in Canada – on genomics, community health ‘needs’, ‘ethics’ and ‘justice’ – and the extent that these are voiced within both policy and media channels Explore the potential of contemporary multimedia productions (from film to professional dance productions to online information resources) for expressing hopes and fears about genomics, and their efficacy as spaces for inclusive democratic deliberation in a just society Experiment with ‘digital storytelling’ as an innovative technique of participatory ethnographic research, and as a novel act of public engagement – to stimulate dialogue between indigenous peoples, scientists, and ethicists Born from the belief that all human beings have a story to tell, digital storytelling allows everyone to become a media producer. Workshops are held in community spaces and participants are trained in scriptwriting, photography and digital video editing. They produce short multimedia tales and publish them online. The technique was pioneered at the Centre for Digital Storytelling in San Francisco and is now used extensively by the BBC and the US-based Indigenous Action Media. It has been used successfully in health communications – for example, to tell personal stories of Alzheimer’s disease and anorexia. It has been popularly received by several indigenous communities, as it allows participants to retain full control over their own stories, and uses the state-of-the-art technology to promote an ancient oral storytelling tradition. It has not yet been used to explore genomic futures, to our knowledge. This research will combine: Semi-structured interviews with indigenous storytellers, multimedia artists and digital storytelling facilitators ‘Textual’ analysis of multimedia productions Ethnographic study of the health needs of indigenous communities Facilitation of digital storytelling workshops and the production of collaborative online resources about human genomics This is a truly collaborative piece of research. We have discussed the project with the Council of Yukon First Nations (CYFN) and Arctic Athapaskan Council (AAC) in Whitehorse, the National Aboriginal Health Organisation (NAHO) in Ottawa, and the Canadian Institute of Health Research-funded Aboriginal Capacity and Development Research Environment in Quebec since the project design stage in 2003. Professor Mike Burgess (Chair of Biomedical Ethics), and Dr Laura Arbour (Assistant Professor in the Department of Medical Genetics), are providing extra supervisory support, and a research base for the fieldwork at the University of British Columbia in Vancouver. Two of CESAGen’s flagship projects – combining media analysis and work with indigenous peoples - provide a wider framework for the research. We are currently seeking an indigenous partner in Canada with whom to carry out the digital storytelling work, and the development of a collaborative online resource. Project outputs will be disseminated through indigenous organisations in Canada, workshops and conferences, submissions to peer review journals, and popular online resources. Aims and Objectives: Research Methods: Key Findings: Wider implications for policy: Project Update: Publications: External Links: Further information:
This project will explore the potential of multimedia storytelling to stimulate public engagement with human genomics research, and to democratise debates about ethics and social justice.
The implications of human genomics for social justice, and the impacts of a market-driven research agenda upon already-trenchant global health inequalities, are too often neglected in debates about ‘genethics’. Globally, the input of various publics into the direction and governance of genomics is minimal at best. And the perspectives of indigenous and other marginalised peoples are voiced the least - within bioethics and the media.
This research aims therefore to:
Born from the belief that all human beings have a story to tell, digital storytelling allows everyone to become a media producer. Workshops are held in community spaces and participants are trained in scriptwriting, photography and digital video editing. They produce short multimedia tales and publish them online. The technique was pioneered at the Centre for Digital Storytelling in San Francisco and is now used extensively by the BBC and the US-based Indigenous Action Media. It has been used successfully in health communications – for example, to tell personal stories of Alzheimer’s disease and anorexia. It has been popularly received by several indigenous communities, as it allows participants to retain full control over their own stories, and uses the state-of-the-art technology to promote an ancient oral storytelling tradition. It has not yet been used to explore genomic futures, to our knowledge.
This research will combine:
This is a truly collaborative piece of research. We have discussed the project with the Council of Yukon First Nations (CYFN) and Arctic Athapaskan Council (AAC) in Whitehorse, the National Aboriginal Health Organisation (NAHO) in Ottawa, and the Canadian Institute of Health Research-funded Aboriginal Capacity and Development Research Environment in Quebec since the project design stage in 2003. Professor Mike Burgess (Chair of Biomedical Ethics), and Dr Laura Arbour (Assistant Professor in the Department of Medical Genetics), are providing extra supervisory support, and a research base for the fieldwork at the University of British Columbia in Vancouver. Two of CESAGen’s flagship projects – combining media analysis and work with indigenous peoples - provide a wider framework for the research.
We are currently seeking an indigenous partner in Canada with whom to carry out the digital storytelling work, and the development of a collaborative online resource.
Project outputs will be disseminated through indigenous organisations in Canada, workshops and conferences, submissions to peer review journals, and popular online resources.
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