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DRAFT - Check Against Delivery

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Senator Stott Despoja

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National Press Club Address - Launch of   Goodbye Normal Gene

Tuesday 16 November 1999

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A Brave New Future

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I begin by acknowledging the Ngunnawal people who are the traditional 
owners of this land.

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It is fitting that we begin this discussion on confronting 
the genetic revolution with reference to our indigenous people.

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As Donald Chalmers states in   Goodbye Normal Gene :

“I think that we shall all keep a watch on the Human Genome Diversity 
Program (w hich identifies distinguishing genes of indigenous, 
or ‘endangered’ human population groups, under the Human Genome 
Project). You may or may not be aware that there are efforts by research 
teams to start taking blood samples of other material for DNA analysis 
to try and trade the movements and migrations of different

peoples…”

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And it is true that many people are not aware of the program which 
is opposed by a number of indigenous people that are the subjects of 
this genetic info discovery program.   [1]

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It is still yet to be determined whether this information 
will actually provide any practical benefits.Â  But the risk of 
stockpiling DNA samples in lieu of preserving genetic diversity is too 
great.Â  The most pressing aspect of this program are questions 
of social justice - issues of privacy, intellectual property, and 
the implications of genetic determinism.

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We must ask ourselves, how will biotechnology impact 
on indigenous communities, what will become of the traditional knowledge 
and genetic knowledge of indigenous communities?Â  While native 
title rights, land rights and some natural resource laws may provide 
some means for the protection of traditional knowledge, biodiversity 
contracts are becoming more and more common.

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In some respects, the Human Genome Diversity Program 
raises general issues which have not been addressed in other forums 
- let alone specifically for indigenous peoples.Â  Issues of privacy, 
ownership and consent are ubiquitous when it comes to genetic information 
and are one aspect of a divergent debate which desperately needs addressing.

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The Human Genome Diversity Project is part of the Human Genome Project 
which is mapping the genes of the human genome, 90% which should be 
completed in working draft form by spring next year.   [2]

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It is true that great deal of the genome appears to 
have no particular purpose.Â  There is a standard joke that has 
geneticists finally decoding some of this material, only to find that 
some great long string of codons reads ‘this space intentionally left 
blank’.

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But it is the portions that are not which has captivated 
our imaginations.

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The need for ethical and cultural discussion and critical 
reflection on the use of the Human Genome Project is demonstrated by 
the fact that only 3-5% of the annual Human Genome Project is set aside 
for research into the ethical, legal and social implications of this 
information.   [3]

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I am honoured to have been asked to launch   Goodbye Normal Gene .Â  As science and technology are two 
of my legislative passions, I jumped at the chance to promote discussion 
in an area which I still feel is underexplored.

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I recently addressed the National Press Club on the 
legislative challenges of new technologies, with specific reference 
the challenges and potential that biotechnology and bioinformatics holds.

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Other contributions the Democrats have made to the 
slowly bubbling debate on the use and impact of genetics includes my 
private members’ Patent Amendment Bill (1996) which acts to prevent 
the patenting of naturally occurring genes, their sequences or base 
sequences.Â  Lat year the Genetic Privacy and Non-Discrimination 
Bill was also debated by the Senate.

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The intention of the Bill is to establish an enforceable 
right for individuals to genetic information privacy excepting with 
an individual’s authorisation and other limited circumstances was 
debated before the Senate.

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I maintain that requiring specific consent for the 
use of human genetic samples in research does not prevent research for 
the public good.Â  Good research and individual rights and freedoms 
are not mutually exclusive - they can both be achieved.

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In fact, such issues of genetic information issues are explored in 
the second part of   Goodbye Normal Gene , for both the individual and the community.Â  
As Christopher Newell states in the book:

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“…those with genetic characteristics identified by insurance  
companies as undesirable already face discrimination.Â  It needs 
to be recognised that the Australian   Disability Discrimination Act (1992)  does not adequately deal 
with this matter.Â  Not only is the issue highlighted in a recent 
Australian article but also in a US report on experiences of 332 people 
with one or more relatives affected by some 10 ‘genetic disorders’.Â  
Over all catergories 43 percent of the subjects considered that they 
or their family had experienced some form of discrimination due to the 
genetic condition.”   [4]

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As a legislator, I believe we must address these issues and approach 
genetic technologies with caution: we must strike a delicate balance 
between scientific advancement and other concerns including individual 
rights, safety and environ mental considerations.

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This book comes at a pertinent time - at the end 
of the nineties - a contradictory decade in which we have juxtaposed 
Austin Powers, lava lamps and twin-sets with the movie GATTACA, email 
and mobile phones.

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The ‘nervous nineties’ have been a time where 
we have tried to cling to the shag pile carpet and all that is retro 
and of comfort  ing , while hesitatively looking ahead to exciting possibilities 
and challenges of bio-enhancement and bio-therapies.

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Just as soon as   The Australian  finishes its special on ‘Our Living Century’ 
- we are hit with a special series by ‘Chronicles of the Future’, 
today’s thinkers anticipating the world in 2099, while the latest 
Time magazine dedicates its’ latest edition to Questions for the Next 
Century.   [5]

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Even on my way to Canberra today Sarah Mac on Triple J was conducting 
a debate on tissue banking and the choices that new technologies will 
provide, especially for women.Â  And this is what we are really 
left with, an ever increasing list of technical, et hical, political 
and legislative questions which science is throwing at us to solve.

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Will computers outsmart humans?Â  Or (the one 
that I am waiting for), will we be able to obtain broad band internet 
access in our cars?

Will we custom design our children? Will we live to 
125?Â  Will we find the longevity gene?Â  When will we cure 
cancer? And, will we need to have sex??

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Even those of us who claim to be immune from pre-millennium 
fever can’t pretend not to be interested in this one!

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Actually, our concepts of reproduction maybe quite 
removed from sex even by the year 2025 as we maybe able to take a sample 
from our body and grow a new person.

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Alongside, to these technical questions is an even 
more complex series of social, cultural and legislative issues that 
remain largely unanswered at present.Â  As I stated in the forward 
to   Goodbye Normal 
Gene:

We as a society must question, not only the 
political and ethical implications of genetics and its application, 
but also the impact of monopolisation of such technolo  gy on the Third World and the very notion of patenting life forms.

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Over the ages, technologies such as astronomy, medicine and atomic 
physics have forced us to re-evaluate the place of our species in the 
natural world.Â  These technologies have both good and bad consequences.Â  
Genetic technology is no different.

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One gene technology which is receiving quite a backlash is GM foods 
at present.

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The power of collective consumer grassroots action and campaigning 
are winning the war against hastily introduced f irst generation 
genetically modified crops.

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When we open the newspapers now, instead of seeing 
articles on how agricultural biotechnology will solve world hunger, 
the headline reads ‘Monsanto roasted in bio-food fiasco’ announcing 
the possible sale of the agribusiness and pharmaceutical multinational.

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After experiencing a 20% drop in share prices in the 
first 10 months of 1999 Monsanto is now under shareholder pressures 
to sell up - or otherwise split its drug and agricultural businesses.Â  
Its multi-billion US dollar investment into agricultural biotechnology 
has not paid off for the simple fact that people don’t want to eat 
the stuff.

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It seems that the tide has well and truly turned.Â  Last month, 
the public face Monsanto, chief executive, Robert Shapiro, admitted 
corporate sin to an audience organised by one of his chief adversaries, 
Greenpeace.Â  He stated that Monsanto have probably i rritated 
and antagonised more people than persuaded, and promised to stop lecturing 
and start listening.

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No company has bet more on genetically modified foods 
and no one has believed in and espoused the virtues of this application 
of genetic technology than Monsanto.Â  Now no company is suffering 
financially and image-wise from the international backlash against these 
gene tech. products.

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As we address the social and cultural implications 
of genetic technology at this forum, today another is being held in 
Melbourne to discuss the Global Opportunities of Non-GMO Markets.Â  
This venture is being attended by KPMG,. Dr John Fagan, a leading expert 
on detecting modified DNA from America in addition to Mara Bun from 
the Australian Consumers Association, the Japanese International Certification 
Service, and others.Â  This forum will pursue how industry can satisfy 
the non-GM export market successfully.

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Today, they have launched ‘FoodCert Consortium’ a GM-free alliance 
which is anticipated to win Australia and New Ze aland tens of 
millions of dollars in food exports - providing a valuable trade niche 
with our European and Asian trade partners.

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It is a case where the Government’s efforts have 
been so inadequate in regulating this technology that industry had to 
take GM foods testing and segregation into its own hands.

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Rodger Hussey, Associate Director of KPMG recently 
stated “Consumers have made their desires plain, the government is 
moving towards putting labelling into place, and there is now a substantial 
non-GM market is moving towards putting labelling into place, and there 
is now a substantial non-GM export market”.

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Costing by the Genetic   ID & CERT ID  behind the FoodCert   AUSNZ  Consortium for ensuring GM free foods have estimated 
a price of 0.2% of product price.Â  This shows the Prime Minister’s 
invention in the Australian New Zealand Health Ministers decision to 
label of genetically modified foods last month to be ill-considered, 
at the very least.

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Consultant companies such as KPMG are constantly in 
the business of future gazing - not just in these current times of 
Pre Millennium Angst, or ‘PMA’.Â  But in pursuit of knowledge 
of future trends and social movements for business and trade advantages.

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Our future is clean and green.Â  Right now across 
the globe, fantastic premiums are being paid for non-GMO products.Â  
Up to 40-50% in some cases and 50-60 cents per bushel for non-GMO corn.   [6] Â  
We can not afford to throw away opportunities for returns like these.

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I hope that the world’s attention will be drawn 
to the potential of the GM-Free market at the upcoming meeting of the 
WTO in Seattle at the end of this month.Â  EU countries, lead by 
France, will oppose the sale of genetically modified foods.Â  Australia 
should take a similar line as we have an isolated and relatively free 
GMO-clean landmass which we should be promoting.

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Like any technology, gene technology is neither implicitly 
good nor bad.Â  It depends on the way it is applied.Â  Genetically 
modified organisms can just as easily be constructed to eat up oil slicks 
as to allow for greater levels of herbicide to be sprayed on crops. 
We have a responsibility to ensure that this technology is applied towards 
sustainable and environmentally sympathetic food production.

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Another aspect of the genetic revolution which cannot 
be put in the ‘good’ or ‘evil’ basket is cloning which is addressed 
by Dr Donald Chalmers in his contribution to   Goodbye Normal Gene.

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I maintain human reproductive cloning should be banned 
- but I find extending this position to therapeutic cloning techniques 
harder to maintain.Â  This could be a powerful technology to regenerate 
diseased organs or damaged tissues.Â  In a few years we may be able 
to ‘de-program’ our own cells and avoid many of the problems that 
we currently are facing with the use of embryonic stem cells in research.

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Cloning also brings up regulatory issues.Â  At present, it is 
outlawed in Victoria, Western Australia and South Australia, with significant 
differences between the legislation in each of these states and the 
rest of Australia operates under ‘ethical guidel ines’.

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I believe that effective coordinated legislation is 
needed in Australia to address the use of cloning techniques.Â  
When it comes to self-regulation, despite best intentions, voluntary 
codes do not always ensure against the potential activities of disreputable 
organisation or therefore instil the public’s trust.

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As Dr Donald Chalmers states in his chapter ‘Role 
of players in human genetics’:Â   
“it is not sufficient for researchers to say: “Trust us we are all 
terribly good at what we are doing”.   [7] Â  
We instead need public education, consultation and legislation.

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We must all ask ourselves - do we need DNA banks 
criminal or medical and what are the implications of these?Â  Is 
widespread revulsion at the prospect of human cloning justified?Â  
Will our values adapt to the new boundaries between chance and choice 
or will our current values, as a community, influence the technologies 
that we produce from genetics?

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Goodbye Normal Gene presents a wide-range of views 
from doctors, journalists, lawyers, ethicists, economists, students 
and consumer rights advocates which Dr Gabrielle O’Sullivan will explore 
shortly.Â  From Ron Trent who explains the techniques of DNA testing, 
to Dr Stephen Leeder, a long-time opinion leader in ethics and genetics, 
exploring what constitutes the human self.

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Or Michele Barker’s photoessay exploring psychological concepts 
of the monstrous to popular portrayals of genetics from Dr McKenzie 
Wark, who we will hear from shortly.

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I congratulate the many contributors to this informative and  
conversational book for raising the issues and forwarding the debate.

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Goodbye Normal Gene  presents traditionally technical and expert 
dominated issues in a considered, engaging and accessible format, providing 
and invaluable tool for public education, understanding and awareness 
of genetics.

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The Australian Health Ethics Committee’s Report 
on the Scientific, Ethical and Regulatory Consideration relevant to 
Cloning of Human Beings recommends that:

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The Minister …should encourage and promote informed community discussion 
on the potential therapeutic benefits and possible risks of the development 
of cloning techniques.

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Goodbye Normal Gene contributes to the wider public 
debate which assists this educative process.Â  We must as representatives 
move debate beyond the ‘expert only’ realm out into the community.Â    Goodbye Normal Gene  
aids getting these issues out there.

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Thank you for your attention and the opportunity to 
launch a publication which seriously contributes to a debate that is 
overdue in Australia.

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[1]  
Kerin, J, ‘Biological weapons from genetic research relying on regulation’,   Australiasian 
Science,  November/December 1999 at page 42.

[2]  
Collins, Francis S., Shattuck Lecture - medical and Societal Consequences 
of the Human Genome Project,   New England Journal of Medicine, Vol 341, July 1 1999, at page 
28.

[3]  
Kerin, J ‘Biological Weapons from Genetic Research’,   Australiasian Science,  September 1999 at page 40.

[4]  
Newell C ‘Critical reflections on Disability, Difference and the New 
Genetics’ O’Sullivan G, Sharman E, Short S, (Ed)   Goodbye Normal Gene,  Pluto Press, 1999 at page 64.

[5]  
http://Cnn.com/ASIANOW/time/magazine

[6]  
Bill Witherspoon, Genetic ID Inc. USA

[7]  
Goodbye Normal Gene at page 79-80.

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jyÂ  1999-11-18Â  13:55

