Past Projects
GenEthics Essay Competition 2006
The genEthics essay competition gives WA high school students a chance to have their say in the debate on ethics and genetics. Run in conjunction with the WA Department of Health, Edith Cowan University, WAIMR, Scitech and Biotechnology Australia, the 2006 competition asked students to consider the pros and cons of taking part in a fictional, long-term, population-based health study. The fictional study would collect detailed health information, including physical and psychological tests along with a blood sample for genetic and biochemical analysis. Students researched and justified their opinions on ethical issues such as privacy, consent, fairness, commercialization, ownership of data and benefit sharing.
First prize was $750 and a school visit by past Australian of the Year, Dr Fiona Wood, which was won by James Spirivulis from Christ Church Grammar School. A copy of the 2006 essay topic is available here [0.5MB, PDF].
Congratulations to all who took part!
Hot Topics 2006
Scitech is a Perth-based science centre with large-scale interactive exhibitions to promote "hands-on" science education to the general public and school children. One exhibition is "Hot Topics" - a changing gallery specially dedicated to examining complex and contentious issues. From July-October 2006, the Hot Topics gallery featured "biobanks", exploring their pros and cons of participation, via video presentations, information boards, and "post-it note" feedback boards made available to record the community's thoughts.
GenREACH and the Centre for Genetic Epidemiology were pleased to be able to work with Scitech and create this interactive exhibit.
Bioethics Symposium 2006
Public Policy and the Governance of Human Genetic Research Databases
29-30 November 2006
University Club, The University of Western Australia
Presented by the Institute of Advanced Studies
Convenors: Meina Lee, Judy Allen and Beverley McNamara
A copy of the symposium brochure is available here [0.4MB, PDF].
This symposium sought to provide a multi-disciplinary perspective on the development of public policy and governance of human genetic research databases in Australia.
Human genetic research databases refer broadly to collections of genetic samples and genetic and other health information, in any combination, which have been created primarily for the purposes of human research.
Human genetic research databases are extremely valuable for medical research and are being increasingly utilised, for example in the field of genetic epidemiology. However, amassing such vast amounts of health data about potentially identifiable individuals engenders difficult ethical, legal and social issues. The development of public policy and strong governance structures must address these issues in a way that reflects community values and promotes good research.
The general theme of "public policy and the governance of human genetic research databases" included the following sub-themes:
- Owning and sharing benefits
- Voluntary or compulsory participation
- Balancing risks and benefits
- Community involvement in policy-making
- Governing databanks
- Legal protection– privacy and discrimination
- Commercial use of human genetic research databases
- Models of consent
- Community attitudes to research participation
Our keynote speakers provided cross-disciplinary perspectives from four core disciplines – law, ethics, science and social science. To allow maximum opportunity for informed and valuable discussion amongst speakers and the audience, keynotes presented a 35-minute paper followed by 30 minutes of discussion, including presentations by two discussants.
Presenters:
- Dr Anne Atkinson, Health Consumers' Council of Western Australia
- Professor Robin Bunton, School of Social Sciences and Law, University of Teesside and Raine Visiting Professor, University of Western Australia
- Dr Oonagh Corrigan, Sociology, University of Plymouth
- Professor Susan Dodds, Faculty of Arts (Philosophy), University of Wollongong
- Ms Karen Carey Hazell, Former Chair of Health Consumers' Council of Victoria
- Ms Michele Kosky, Health Consumers' Council of Western Australia
- Professor Louis Landau, School of Paediatrics and Child Health, Faculty of Medicine, Dentistry and Health Sciences, University of Western Australia
- Professor Graeme Laurie, School of Law, University of Edinburgh and Chair of the UK Biobank Ethics and Governance Council
- Professor Margaret Otlowski, Faculty of Law, University of Tasmania
- Professor Lyle Palmer, UWA Chair of Genetic Epidemiology
- Professor Alan Petersen, Sociology, University of Plymouth
- Professor David Ravine, Head, Laboratory for Molecular Genetics, UWA Foundation Chair in Medical Genetics
- Professor Fiona Stanley, Director, Telethon Institute for Child Health Research
- Professor Ron Trent, Chair, NHMRC Human Genetics Advisory Committee, Australia, and Professor of Molecular Genetics, University of Sydney
- Dr Steven Webb, Senior Lecturer in Medicine and Chair of the Human Research Ethics Committee, University of Western Australia
Bioethics Symposium 2004
Genomics Directions: Bioethics and Beyond
15-16 October 2004
WAIMR Seminar Room, WAIMR
Presented by the Institute of Advanced Studies
Convenors: Beverley McNamara and Kathleen Deas
This Symposium focused on the ethical, legal and social implications of human genetic research; in particular population based genetic epidemiological research. Issues and ethical dilemmas associated with human genetic research were considered including: privacy, consent, public consultation, research governance, genetic discrimination, genetic data management and international biobanks. Prominent international and national scholars in Law, Bioethics and Social Sciences joined our local scholars and professionals to debate the important field of human genetic research.
Presenters:
- Dr Beverley McNamara, Anthropology & Sociology, University of Western Australia
- Professor Peter Klinken, Director, WAIMR
- Dr Nik Zeps, Director, WA Research Tissue Network
- Dr Peter O'Leary, Director, Genomics, Dept. of Health WA
- Professor John Harris, Manchester University
- Mr Malcolm Crompton, Former Federal Privacy Commissioner
- Dr Jane Kaye, Oxford University
- Dr Nina Hallowell, Edinburgh University
- Ms Judy Allen, Law, University of Western Australia
- Professor Andrew Brennan, Philosophy, University of Western Australia
- Dr Liz Lobb, NHMRC Post Doc Research Fellow, WA Centre for Cancer & Palliative Care, Edith Cowan University
- Ms Senela Bilik, WA Research Tissue Network
Speaker Biographies
Professor John Harris: "The Ethics of Stem Cell Research"
15 October 2004, The University of Western Australia
Professor John Harris is a distinguished professor of bioethics at the Institute of Medicine, Law and Bioethics, University of Manchester, United Kingdom. Professor Harris is joint Editor-in-Chief of The Journal of Medical Ethics. He is author or editor of 15 books and over 200 papers. John Harris was a Founder Director of the International Association Of Bioethics, a founder member of The United Kingdom Human Genetics Commission, a Fellow of the Academy of Medical Sciences and a member of the Ethics Committee of the British Medical Association. He was Project Director for the Commission of the European Communities and directs a study of ethical and policy issues of human stem cell research and therapy.
Malcolm Crompton: "Proof of ID required? Getting Identity Management Right"
16 October 2004, The University of Western Australia
Malcolm Crompton is the former Federal Privacy Commissioner and is a distinguished national and international consultant on privacy. Malcolm was a member of the National Health Information Advisory Council and was a member of the committee of review of DNA forensic procedures under the Commonwealth Crimes Act, a member of the Advisory Committee to the Joint ALRC/AHEC Inquiry into Protection of Human Genetic Information and he is a member of the External Advisory Board of the IBM Privacy Institute. He is the author of many papers and has established the Trust Dimension as an advisory body focusing on data governance for organizations.
