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Tuesday, 12 November 2002
Page: 6125

Senator RIDGEWAY (6:16 PM) —I also rise to speak on the Research Involving Embryos Bill 2002, which establishes a nationally consistent regulatory framework covering, amongst other things, access to excess `assisted reproductive technology' embryos for embryonic stem cell research. This is a particularly difficult bill to deal with because I believe in many respects it asks each of us to somehow gaze into a crystal ball and see something about an unknown human future. The bill raises questions about who has the right to define life and it challenges the very definition of life and self-definition.

However, it is a compelling argument that, while many people suffer cell degenerative diseases, stem cell research—and, more particularly, embryonic stem cell research and its applications—might offer some cures for those afflicted with leukaemia, type 1 diabetes, Parkinson's disease, some heart conditions, and so on. The question is: how should we respond to the promises and misgivings of advances in stem cell science and other fields of biotechnology such as genetic engineering? This is a difficult question.

It must be said from the outset that there is no conventional wisdom in relation to embryonic stem cell research. There is no question in my mind that modern science and technology have made extraordinary leaps forward in a very short period of time. The application of new medicine has allowed us to intervene to make human life better. This is the way it has always been—steady steps forward, punctuated by significant breakthroughs to make life better but with regulation where and if it is needed. Stem cell research itself should not be seen in isolation from other developments in the field of biotechnology and the debate to date should not preclude discussion on some of those wider issues.

I want to draw attention to a project known as the human genome study, which was undertaken in the early 1990s by the Human Genome Organisation—a global organisation that established a genome diversity project to study the genetic richness of the entire human species. It was essentially a global study into population genetics which sought to trace history and cure disease by investigating human, animal and plant genes. Plant and animal gene research has been occurring for some time, but it is only since the mid to late 1990s that human genes have been used in research.

Dolly the sheep has been the most famous case of genetic cloning and, in my view, has triggered the wildfire about moving a step closer to human cloning itself. The response of the Prime Minister to ban human cloning is indeed morally and ethically correct. The scientists involved in creating Dolly—Ian Wilmut, Keith Campbell and Colin Tudge— never intended exact replication or virtual resurrection. Their intention and longer term ambitions lie in using animal and human cells for purposes in medicine, agriculture, conservation and science.

One aspect of the human genome research project was, however, designed to benefit humankind through research on the study of adaptation and disease, especially in relation to human anatomy, physiology and disease susceptibility. The human genome research project conducted the world over also came to Australia, driven by the purpose of collecting human tissue and blood samples from linguistically distinct groups in 12 Aboriginal communities. The thinking simply was that those groups worthy of study included isolated population groups because of their `pure' bloodlines and their capacity to provide genetic information unique to that group which would not exist anywhere else on the globe.

At the time, Aboriginal groups across the country—and, for that matter, across the globe—reacted swiftly, labelling the initiative `the vampire project'. But it also raises issues about ensuring that the individuals involved understand what they are involved in, that there must be a process of acquiring fully informed consent, and that people are entitled to the benefits of the information gathered. These earlier and continuing research projects are integral to the current debate in that the collection of genes and their manipulation in stem cell research is what can and may lead to modified stem cell outcomes to form liver or lung or heart tissue to assist wellbeing. Stem cell research does raise ethical, moral and legal issues which are yet to be determined. There is no question that research in stem cell sciences—as indeed in other areas of biotechnology—does raise serious questions about the impact that such advances may have upon our society, our economy and the environment.

In particular, we should be having a fuller debate about the application of this new science to reproductive technology and surrogacy, human organ reproduction, human gene or stem cell surgery and future genetic discrimination. Additionally, it further raises issues about the commercialisation of the gene pool by those in agricultural, pharmaceutical, chemical and biotech organisations. On the matter of reproductive technology I, like my colleague Senator Andrew Murray, have concerns in this area. In particular, it raises further questions about the rights of the child. Following on from the inquiry into the stolen generations, I have come to the view that there is an innate belief, a requirement and a compulsion in every human being to know what they are the sum of. All of the members of the stolen generation were removed from their families and communities. Many since then have been on a journey to discover themselves and rediscover their family history.

To this end, Senator Murray has already moved a second reading amendment in both our names which seeks to acknowledge the standards as set under the UN Convention on the Rights of the Child concerning the preservation of identity, acknowledging that the Australian ethics committee guidelines of 1996 reinforce the concept of biological identity, and further urges the Senate to do all in its power to ensure that every child, whether adopted or conceived using assisted reproductive technology, can access information about their biological parents. I believe these requests are not onerous. They provide the means by which we guarantee that people related but unknown to each other do not cross-fertilise in a small population gene pool such as that which exists in Australia. At the very least, this would bring us more into line with accepted international standards on accessing national, state and territory databases.

On the matter of commercialisation, it is apparent that state sponsored research is now steadily moving towards privately funded research. This inevitably raises questions of the profit motive, the patenting of material and the rights and benefits available to individual donors. At the very least, it is important not only that appropriate guidelines are put in place but also that international instruments concerned with intellectual property and more particularly trade agreements impose stronger restrictions on the patenting of human or genetically modified material.

The Democrats have a longstanding interest in these issues. My colleague Senator Stott Despoja introduced private members' bills in 1996 and 1998 that went to protecting naturally occurring genes and gene sequences and genetic privacy. We have contributed in depth to these and related debates for many years. We also have a keen interest and strong legislative record in dealing with intellectual property and patent issues and just last year successfully amended the Patents Amendment Bill to ensure that publicly funded research institutions including universities and the CSIRO are not burdened by onerous compliance costs in establishing patents.

Balancing the rights of inventors and the community requires good judgment. It is not an area that is amenable to ad hoc interventions, no matter how well intended. While issues of intellectual property and patent law do not form part of this bill, I do commend to the Senate the concise discussion on these issues in the supplementary report in favour of the legislation written by Senators Stott Despoja, McLucas and Webber. Their report effectively foreshadows two amendments and I note that Senators Stott Despoja and McLucas have already circulated amendments concerning the applicability of a national stem cell bank.

On behalf of Senator Stott Despoja, I now foreshadow that we will be moving a second reading amendment standing in her name. This amendment, on sheet No. 2701, was circulated to all senators last night. The intent of this amendment is to establish a process by which the Australian Law Reform Commission and the Australian Health Ethics Committee will review the intellectual property and patenting considerations of stem cell science including stem cell products. As the Senate will be aware, the ALRC and AHEC are currently doing a very comprehensive review of protection of human genetic information. It is clear to the Democrats that they are best placed to do this review, as they are very well grounded in the challenges posed by genetic sciences. The amendment also requires that the report be presented to both the parliament and the persons conducting the independent review of the act that is required in clause 47 of this bill and clause 25 of the Prohibition of Human Cloning Bill.

The intent of the Democrat amendment is to encourage a holistic approach to considering intellectual property and stem cell sciences. Our current legislative framework is not adequate in this regard. I am aware that other senators have picked up on those recommendations. Their comments in the chamber and to the press have indicated their interest in addressing similar issues. Their support for the approach outlined by Senators Stott Despoja and McLucas is welcome and I look forward to further discussion on these matters when we get to the committee stage.

Finally, in this debate we are being asked by some to reject these bills because of fallacies, religious beliefs and superstitions. If we had applied such rigidity and dogmatic views in our past we might never have arrived at the position we now find ourselves in or indeed no medical development might have occurred at all. At the end of the day, I must ask myself whether the proposal is capable of being adverse to the wellbeing of society, of undermining a sense of morality or of not being good public policy. Like many of us, I have received letters from people who hold out great hope that these advances in science and technology will directly assist someone they care for. They may indeed be lifesaving but we will never know unless they are given the chance to show us what good they are capable of.

Of course there must be stringent guidelines in place to prevent ghoulish acts, but it is clear that any new research must have the wellbeing of society at heart in every sense of the word. Some also say that this type of intervention interrupts the natural selection process that has evolved for thousands of years. Let us not forget that it was Darwinian thinking intertwined with biblical thinking that led to the concept of the inferiority of the black man, eugenics racism and inevitably apartheid in places like South Africa. I do not see the new advances in science as interrupting history. How in the natural selection process do we explain a breakdown in the differentiation processes in forming a human being or a plant or an animal? Birth defects are but a classic example. How do we account for continuing interruptions in the lives of people we know with heart disease, diabetes, Parkinson's disease, nerve cell degeneration, leukaemia and cancer?

I do not believe for a moment that this is about understanding or displacing God but it is about understanding science. The cases crying out for attention seek some remedy and I believe that we should venture down this path in the hope that many cures might be found. I do not regard embryos, excess or otherwise, as having no value or of being relegated to a functional or resource part of the process. They do have a special status. I would hope that with the status I have given them we will be given the chance to move forward. I support the passage of these bills. (Time expired)

Sitting suspended from 6.30 p.m. to 7.30 p.m.