Date Published: 4 March 2009

Human Genome Research Project releases final report

Health News from New Zealand.

The Human Genome Research Project (HGRP) has released its final report, drawing a line under nearly three-and-a-half years of research, traversing the many legal, ethical, medical and cultural issues surrounding the regulation of human genome-based technologies in New Zealand.

Sponsored by the New Zealand Law Foundation, the University of Otago Law Faculty-led project has drawn on New Zealand and overseas expertise from a range of disciplines to produce a series of reports totalling 1800 pages.

The third and final volume of Genes, Society and the Future covers a range of topics, from pharmacogenetics, or so-called personalised medicine, to the implications surrounding the use of genetic testing for insurance purposes.

Other topics include the impact of the patenting of genetic knowledge on research, accessing stored human tissue samples for genetic research, and issues surrounding intellectual property gained from studies of whole communities. The report examines issues around preimplantation genetic diagnosis (PGD) by building on the recommendations of the project's first report Choosing Genes for Future Children.

Project leader and Law Faculty Dean Professor Mark Henaghan says genetic knowledge is both inspiring and intimidating.

"It taps into our strongest hopes and our deepest fears. This knowledge can be used to choose the genes of future children, test for potential diseases in our genetic make-up, find the relationships between illness, genetic profile and environmental influences in a community, and design drugs which are better suited for our particular human genome," he says.

"It can also be misused to discriminate against those with certain conditions once we know their genetic code."

Professor Henaghan says the objective throughout has been to determine whether regulation is necessary or not.

"Our focus has been to analyse the benefits and harms from a range of perspectives and disciplines. We give each position as fair a hearing as possible. We then take a position which is contestable and will not be accepted by everyone," he says.

"In a democracy, this is the only way we can proceed on issues which both have the potential to divide and unite us."

Professor Henaghan says the project team is hugely indebted to the New Zealand Law Foundation for enabling this research to be carried out.

"One of the strengths of the Human Genome Research Project is that it is independent of Government or any particular interested professional body."

Law Foundation Director Lynda Hagen says they are proud of what has been achieved.

"The Law Foundation-sponsored Project's strength is its multidisciplinary approach, combining legal, scientific, medical, ethical, cultural, and philosophical perspectives. This research will give the people of New Zealand the ability to appreciate and discuss ethical choices and will help inform policy makers in developing appropriate policy and regulatory framework.

We recognised the need to take the initiative and explore significant areas where it appeared that the development of the law may well be lagging behind developments in biotechnological advancement."

Ms Hagen says the sponsorship of the Law Foundation has meant the HGRP has remained independent, lending significant weight to its findings and recommendations.

"It is pleasing to know that this valuable research will be able to continue with the establishment of the New Zealand Law Foundation Chair in Emerging Technologies and a new Centre for Law and Policy in Emerging Technologies within the Law Faculty at Otago."

The establishment of the new Chair has been boosted by a $1.5m endowment from the Law Foundation, as well as $500,000 from the University of Otago's Leading Thinkers initiative with the Government.

The new centre will focus on projects relating to legal issues, regulations and policies affected by the increasingly rapid rate of technological advancements.

The third and final volume of Genes, Society and the Future will be launched by the Hon Simon Power, Minister of Justice and Minister Responsible for the Law Commission, at a parliamentary function on Wednesday 4 March. The Project will hold an evening of public talks in Auckland, at the Lewis Lecture Theatre, Faculty of Medical and Health Sciences, from 5.15pm to 7.15pm on Friday 6 March.



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