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Experts to debate human genetic research issues

Top Australian and New Zealand experts to debate human genetic research issues

Some of Australia and New Zealand’s leading experts on the legal and ethical implications of human genome research will gather in Melbourne this Friday (28 November) to debate current issues in this often-contentious research field.

Discussion topics include pharmacogenetics, gene patents, “designer babies”, population screening, eugenics, ownership and data protection relating to genetic material, human rights and matters of concern to indigenous peoples.

Both countries have produced significant research in the field, through the Australian Law Reform Commission (ALRC) reports on the protection of human genetic information and gene patents and with the recent Genes, Society and the Future reports from the New Zealand Law Foundation-sponsored Human Genome Research Project (HGRP) led by the University of Otago’s Faculty of Law.

The meeting will be the first major Australia-New Zealand Roundtable on Genetics, titled Transforming Research into Practice, Policy and Law Reform. It will draw on the expertise of Justice Michael Kirby from the High Court of Australia, who is on the Advisory Review Committee for the HGRP project, and Professor Mark Henaghan, Otago Law Faculty Dean and leader of the HGRP.

“Our aim is to bring together a distinguished, high-level group of leading thinkers from both countries to discuss the legal, ethical and policy gaps that have been identified,” says Professor Henaghan.

“I think New Zealand and Australia have a lot of common ground, but more importantly I think we can work together more to take a joint approach to addressing the changes that are needed to genetic research and clinical practices, ethical guidelines, and the law.”

The roundtable will be chaired by Justice Bruce Robertson of the Court of Appeal of New Zealand. Opening comments will be by Senator Jan McLucas, Parliamentary Secretary to the Minister for Health and Ageing.

“The legal, ethical and policy issues around human genetic research are complex and common to us all. I welcome New Zealand’s initiative in setting up this event so we can exchange views and learn from each other,” Senator McLucas says.

The opening address will be given by Justice Kirby, while Professor Henaghan will outline findings from the reports released by the New Zealand HGRP over the past three years.

Professor of Adult Clinical Genetics at the University of Melbourne Professor Ingrid Winship will look at Developments and the Future for Joint New Zealand-Australia Genetic Initiatives. Professor Loane Skene from the University of Melbourne will address emerging legal, ethical, social and policy implications.

Issues surrounding genetics and indigenous peoples will also be examined with input from both sides of the Tasman.

President of the Australian Law Reform Commission Professor David Weisbrot will speak on the process of moving from research findings and public consultations, to producing policy and law reform.

The roundtable, initiated by the New Zealand Human Genome Research Project will be held at Seminar Room 1, Function Centre, Royal Melbourne Hospital. The roundtable event is open to the public with 30 seats on a “first come first served” basis.


Background - NZ Human Genome Research Project

The New Zealand Law Foundation-sponsored Human Genome Research Project is a multidisciplinary and international project examining whether, how, and to what extent, human genome-based technologies should be regulated.
(continued below)
Led by the University of Otago’s Law Faculty, the project was initiated by the New Zealand Law Foundation which had recognised that the rapid development of genetics research has outpaced the much needed medical, ethical, legal and cultural analyses and debates.

Project leader and Dean of the Faculty Professor Mark Henaghan says the project has traversed many complex issues over the past four years, such as pharmacogenetics, gene patents, ‘designer babies’, population screening, eugenics, ownership and data protection relating to genetic material, human rights and matters of concern to indigenous peoples.

"We now need to develop the range of legal, ethical and policy options for these issues, so we can enjoy the benefits of the advances in gene technologies while still being able to respond to risks of harm, perceptions, beliefs and public concerns.”

To date the project has produced a series of reports totalling some 1300 pages, thus far, covering topics including pre-implantation genetic diagnosis (PGD), newborn screening and genetic testing of children, issues surrounding community genetics and the need for a Maori Ethical Framework for research relating to Maori health.

The role of the New Zealand Law Foundation

The Human Genome Research Project is an initiative of the New Zealand Law Foundation.

The Foundation decided to establish the project after identifying the relative absence of legal and policy analysis in New Zealand around the rapidly emerging issues from human genetic technologies. The Otago Law Faculty was selected in 2002 to lead a multidisciplinary research team involving international collaborators.

The Foundation is an independent charitable trust that provides grants for legal research and public education on legal matters. As such, it is the only funder of ‘pure’ legal research in New Zealand – other legal research funding is tied to public policy development.

In addition to its grants programme, the Foundation also awards annually the International Research Fellowship, New Zealand’s premier legal research award.

Ends.


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