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| ies it will not be the same for all time and it will not receive universal approbation. We need to be commit finance loan refinance ted as a community to a process by which we can achieve a reasonably well-accepted solution. The ALRC-AHEC Inquiry is just one aspect of this process. The fourth issue concerning reform fo finance loan refinance r the future is to recognise the inter-disciplinary nature of the issues. [Slide 16] Generally professionals like to keep the company of other like-minded professionals—it is comforting not to be too strongly challenged by those from other disciplines. However human genetics is an area that requires a different approach. This inquiry has been a good example of the benefits of inter-disciplinarity. The professional staff of the Australian Law Reform Commission is composed entirely of lawyers. If that finance loan refinance were the only expertise brought to this process it would be fair to question the validity of its ultimate recommendations. However we have conducted this process in conjunction with the Australian Heal finance loan refinance th Ethics Committee. We have established advisory bodies with ecumenical membership and we have also consulted widely with relevant stakeholders. This demonstrates the importance of establishing procedures that involve people from many different disciplines. The slide is just suggestive only. I am sure I will have offended someone by omission. The point is that we need to be broadly inclusive in this process. The fifth aspect is to recognise that this is a global process. [Slide 17] Lawyers can often be quite blinkered in their view of the world. Their thoughts are often confined by the jurisdiction in which they happen to b finance loan refinance e working. But science is truly an international discipline and does not recognise national boundaries. When one sets a policy framework in this context one needs to be conscious of these global dimensions. There are four important aspects here which I will mention briefly. First it is important to note that there is an international dialogue going on about many of these issues in which shared understandings can sometimes be reached about the ethical foundations of genetic testing and the use of genetic information. Examples include the UNESCO Declaration on the Human Genome and the European Convention on Human Rights and Bio-Medicine. The processes are ongoing we need to engage with them. Second we need to be aware of comparative practices in other jurisdictions. These may serve as models of international best practi finance loan refinance ce but equally they may serve as examples of practices to be avoided. Being cognisant of them is a start. Third we need to recognise the fact of mobility of people materials and information. There are some important consequences of this. For example if you highly regulate parentage testing in Australia it is likely that you will channel some portion of that market into services provided ove finance loan refinance rseas through the internet. t is the same with medical research if the local climate is highly unfavourable then you will channel researchers into countries that have a more benign view of the research to be undertaken. Lastly the permeability of national borders does not necessarily mean that we have to be participants in a race to the bottom. We need not opt for a system of regulation that is the lowest common denominator. Instead we should have minimum standards and we should insure that there are appropriate domestic mechanisms to enforce those standards. For example federal privacy legislation contains provisions about sending information across national borders according to the compatibility between foreign privacy regimes and our own. Similarly NATA has mutual recognition agreements with some countries for the purpose of accreditation again based on compatibility of standards. We also need to consider the issue of flexibility. [Slide 18] In the past law reform was often regarded as an opportunity to present the Attorney-General and Parliament with a new draft Act for implementation. We could have gone down this track in the present inquiry if we had adopted the approach of the 1998 Stott-Despoja Bill on genetic privacy and non-discrimination. However we have not done this. Instead we have examined alternative styles of regulation self regulation and co-regulation. To give you an example there are about 105 proposals in Discussion Paper 66. On a quick count only 42 of them—about 40%—actually propose any legislative change. The majority of them are about other forms of regulation. This reflects the fact that we are dealing with dynamic scientific processes. It recognises the fact that the law is often slow to be changed and it recognises the fact that the law is not the only way to affect human conduct. We employ diverse strategies in developing a reform program that will have longevity. We propose an additional chapter in the NHMRC’s national statement. We suggest model regulations in relation to the use of genetic testing in employment through the National Occupational Health and Safety Commission. We suggest the possibility of disability standards under the Disability Discrimination Act. We look to industry codes of practice such as those developed by the life insurance industry in relation to genetic testing and we discuss the merits of extending it to other areas not currently covered such as family medical history. We discuss the development of policy manuals for use by bureaucrats in administering immigration programs. The range of available institutions also needs to be considered. [Slide 19] Naturally enough you would expect me to say that the ALRC has an important function in developing an appropriate framework to regulate human genetic information. And I do indeed think it has that role. But we are not a long term solution because once we report in March 2003 our functions in relation to this project come to an end. At that point it will be necessary to consider other institutions that can carry reform forward. We can use consumer finance loan refinance networks industry bodies and professional organisations. We have also proposed the creation of a new advisory body for government which we see as having two functions. First it would provide high level policy advice to government on issues of human genetics. Second it would provide technical advice about the use of genetic information in particular contexts such as insurance and employment. Such bodies have already been established in the United Kingdom and in Ontario Canada and we believe they provide useful models for consideration in Australia. Many of yo finance loan refinance u will be familiar with the uncertainty principle which Werner Heisenberg developed in the field of quantum mechanics in t finance loan refinance he 1920s. [Slide 20] The basic assumption of Newtonian physics up to that point was that the real world exists independently of observation. Heisenberg’s observation in the context of sub-atomic particles was that the fact of observation actually affects the processes observed. I would like to draw a long bow here and say that there is an analogy with law reform. It is often the case that the mere fact of inquiry makes people reflect and change their behaviour before any new regulations are put in place. This is usually because stakeholders would like the benefit of dusting out their own house before someone else finds it necessary to call in the commercial cleaners. One of the benefits of a human genetics commission such as the one we propose is that it would undertake continual review prompting continual reflection about processes so that people can get their own houses in order without the necessity for intrusive government regulation. And finally in the spirit of the Conference a very simple ending in which you will have no difficulty “Breaking the Code”. This is my finance loan refinance hope for the Inquiry. [Slide 21] | |||||||||||||