SYMPOSIUM: GENOMICS DIRECTIONS: BIOETHICS AND BEYOND

GENOMICS DIRECTIONS: BIOETHICS AND BEYOND

BIOETHICS SYMPOSIUM

Date : Tuesday 16 November 2004 Time: 9am - 3.30pm

Venue: WAIMR Seminar Room Hospital Avenue Nedlands www.waimr.uwa.edu.au

PUBLIC LECTURES VENUE: Geography Lecture Theatre 1, UWA http://maps.uwa.edu.au/crawley/display/6

Conveners: Dr Beverley McNamara, Anthropology, and Kathleen Deas,WAIMR Laboratory for Genetic Epidemiology

Tuesday, 16 November 2004

This Symposium will focus 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 will be 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 will join our local scholars and professionals to debate the important field of human genetic research. There will be two free public lectures associated with the symposium:

Public lecture by Professor John Harris, University of Manchester

November 15 at 6.00pm at the Geography Lecture Theatre 1, UWA

And

Public lecture by Malcolm Crompton “Proof of ID required? Getting Identity Management Right”

November 16 at 6.00pm at the Geography Lecture Theatre 1, UWA

Full program available at http://www.ias.uwa.edu.au/activities_and_programs

Cost: $10/$5 students (includes lunch, morning and afternoon tea)

RSVP: Wednesday 10 November 2004 Registration at: www.ias.uwa..edu.au

KEYNOTE SPEAKERS: Dr Jane Kaye is a prominent lawyer and research fellow at UniEthox Centre, Institute of Health Sciences, University of Oxford, United Kingdom. Dr Kaye is working with the Oxford Genetics Knowledge Park associated with the UK Biobanks, is part of the ELSAGEN group and is an expert in consent issues regarding Human Genetic Databases. Jane’s research focuses on the legal and ethical issues around genetic testing such as consent, confidentiality, privacy and the public interest. Her particular interest is broad consent and ensuring public trust.

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.

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.

Dr. Nina Hallowell is a distinguished lecturer in Social Sciences and Public Health, Public Health Sciences, The Medical School at University of Edinburgh, a Project partner on the EU funded EMPIRE project, has worked in Cambridge with Professor Martin Richards (co-editor of The Troubled Helix) Her research interest lies in the social and ethical implications of the new genetic technologies in particular cancer genetics, ethical and social issues of genetic testing; the relationship between bioethics and empirical research; the use of human sample collections (particularly DNA) as a research resource; lay understanding of health risks and risk management and lay-professional interaction.