Events

Genes for Health Conference

The Genes for Health conference was held from 2–6 May 2009 in Fremantle, Western Australia. Genes for Health was GRaPH-Int’s inaugural conference, which was combined with the HGSA’s 33rd annual scientific meeting. Prior to the conference, there were Special Interest Group meetings of the Australasian Association of Clinical Geneticists, Australasian Society of Genetic Counsellors, Australasian Society of Cytogeneticists and the Molecular Genetics Society of Australasia.

The conference attracted over 300 national and international delegates. There were 169 abstracts received and 28 were invited for oral presentations. The program covered a range of topics including basic genetic science, clinical genetics and genetic counselling, genetics education, genetic epidemiology, bioinformatics, social science, bioethics and health policy. Highlights of the conference were the Sutherland Lecture by Professor Andrew Sinclair and the HGSA Oration by Dr Ian Walpole. An entertaining debate was moderated by Dr Cyril Mamotte between Professor Wylie Burke and Associate Professor Martin Delatycki on “Should we screen for HFE-associated Hemochromatosis?” We are pleased to acknowledge the financial support of The University of WA, Curtin University of Technology, Edith Cowan University and our silver sponsors – Biomarin, Roche Diagnostics and Genzyme.

Challenges for Society in the Genetic Information Age

The Office of Population Health Genomics (OPHG)hosted The Challenges for Society in the Genetic Information Age seminar, held on the morning of Monday 11 May, 2009. This seminar consisted of three presentations from international researchers, who raised bioethical issues regarding genetics for society.

New Directions in Bioethics

Professor Mike Burgess, from the University of British Columbia, Canada began the seminar by introducing challenges of empirically measuring attitudes in bioethics. This included describing the importance of people’s perspectives and morals. Also, the way people approach or make choices on genetic issues by considering context, experiences and life stories, known as relational responsibility.

These initial ideas about relational responsibility and moral life were used to frame a new direction in bioethics research, known as deliberative democracy. Deliberative democracy, is a relatively new approach where members of society from diverse backgrounds are informed about multiple perspectives on complex issues and try to make consensual judgements. To illustrate this new direction in bioethical research, he described deliberative democratic public engagement in the context of an event he was involved in, in Canada, to discuss biobanks, the storage of tissue samples and data.

Challenges in the Genomic Age: Public Involvement and Social Impact

Following on from Professor Burgess, Dr Kieran O’Doherty from the University of British Columbia, Canada, touched on the outcomes of public engagement events and the social impact of dealing with genetic risk.

Although deliberative public involvement is emerging as a new way of trying to understand underlying public values and perceptions of genetics and biotechnologies, this approach is not suitable for all issues. Also referring to the recent deliberative event in Canada, Dr O’Doherty demonstrated that from these types of public involvement events more detailed information can be obtained regarding specific aspects of biobanks including consent, collection of samples and the governance of biobanks, which are based on informed decisions by representatives of the public. In addition, compared to other methods, including surveys, this type of public involvement obtains reasons and explanations.

In conclusion, Dr O’Doherty discussed the potential outcome of research using biobanks can include personalised medicine and suggested that more needs to be understood about how risk is calculated and how people make sense of their genetic risk.

Predictive Health as a Case Study in Translational Bioethics Policy

Professor Eric Meslin from Indiana University, USA spoke about the importance of public involvement in the translation of science from research to practice. A major part of Indiana University’s Centre for Bioethics, where Professor Meslin is Director, is community research regarding bioethics, in order to bridge the gap between basic and clinical research and excellent health service delivery.

Using the example of the Indiana University and Moi, Kenya Academic Research Ethics Partnership Project, he explained how they discovered from focus groups with Kenyan patients, clinical researchers and administrators that it would be unfair to cease from receiving post benefits and access to treatment after the conclusion a clinical trial. This example highlighting the importance to consider the publics views when deciding health care delivery.

For further information on these presentations see these articles from Science Network WA:

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