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| Centre for Law and Genetics Breaking the Code Symposium Melbourne 29 N kansas refinance ovember 2002 Brian Opeskin Commissioner Australian Law Reform Commission ALRC. During the ALRC’s Inquiry into the Protection of Human Genetic Information we have had to confront a perennial problem how can effective law reform be achieved in a field of rapidly changing technology. There are many different words for those who seek to offer us a window into th kansas refinance e future. The richness of the language suggests the diversity of their arts we call them augurs clairvoyants occultists oracles sages prognosticators prophets seers sibyls soothsayers and visionaries. We may soon also come to call them geneticists. Their arts have spanned the whole of human history. The Etruscans divined the future by observing the entrails of sacrificed animals. The liver was their favourite organ from its colour shape and size they foretold the future. [Slide 2] The ancient Greeks revered the opinions of Pythia the oracle of Delphi who uttered her gibberish from a cliff top on Mt Parnussus in Greece. [Slide 3] More recently in the 16th century the French prophet Nostradamus offered his own poetic predictions about the end of the world. [Slide 4] Depending on one’s point of view we also have other nam kansas refinance es for those who claim to be able to peer into the future. We call them charlatans con-artists fakes frauds and quacks—largely because their capacity to predict the future accurately is so poor. The capacity for misprediction is not confined to ancient times. It is worthwhile co kansas refinance nsidering some of the great mispredictions of history particularly in relation to science and technology. [Slide 5] In 1839 a famous surgeon Alfred Velpeau said ‘The abolition of pain in surgery is a chimera. It is absurd to go on seeking it today. ‘Knife’ and ‘pain’ are two words in surgery that must forever be associated in the consciousness of the patient. To this compulsory combination we shall have to adjust ourselves.’ In 1889 Thomas Edison made the following statement about electricity ‘I have always consistently opposed high-tension and alternating systems of electric lighting … not only on account of danger but because of their general unreliability and unsuitability for any general system of distribution.’ In the 1940s the founder of IBM Thomas Watson believed that the total world market for computers would be no more than five. And in 1945 an explosives expert advising President Truman confidently asserted that ‘the [atomic] bomb will never go off. The art of prediction has not been confined to the dustbin of history. Consider Andrew Niccol’s 1997 film GATTACA which many of you will know. In GATTACA the protagonist Vincent Freeman lives in a ‘not too distant future’ in which an individual’s genes largely determine his or her place in society. [Slide 6] Vincent is unlucky enough to be conceived without the benefit of pre-implantation screening. He is born with a genetic profile that gives hi kansas refinance m a 99% probability of a fatal heart disorder with a resulting life expectancy of 33. As a result Vincent’s employment prospects are severely limited. While he dreams of going into space as an astronaut working for the Gattaca Aerospace Corporation in fact his genetic resume qualifies him only to work as a cleaner at Gattaca. The film is both fascinating and chilling because it demonstrates the power of human genetics to yield information not only about what we are today but also about what we might become. That is the starting point for the reference that we have been pursuing for the last 18 months. You will probably already be aware that we have been asked to look at three things. We were asked to examine how in relation to human genetic information we can best protect privacy prevent unfair discrimination and ensure the highest ethical standards in medical research and practice. [Slide 7] We have looked at these issues in a range of contexts medical research and clinical practice databases tissue banks familial cancer registries and many others. [Slide 8] We have also examined these issues kansas refinance in other contexts which have been the subject of discussion in other papers today—such as employment insurance and parentage testing. [Slide 9] I will not go into the detail of these topics today. Instead what I would like to explore is the range of difficulties that rapid change poses for law reform in the context of this Inquiry. This is probably the best known sheep on the planet. [Slide 10] The question is will the vision of Gattaca turn out to be fact or fiction? It is interesting to note that at the time Gattaca was re kansas refinance leased film reviewers had this to say about its underlying premise ‘It is highly dubious whether any of the genetic engineering portrayed in the film will ever be possible.’ With the benefit of five years experience we have fresh insights into the plausibility of that underlying premise. I have listed here just some of the genetic events that we have witnessed in those five years since the film was released [Slide 11] the cloning of Dolly the sheep sex selection of embryos the completion of the first mapping of the human genome the use of gene therapy the alleged reproductive cloning of humans (which is in the newspaper again today) and the advent of designer babies. The kansas refinance list continues. Just a few weeks ago there were media reports of a machine the size of a shoe box which was reputed to be capable of undertaking DNA diagnostic testing within the space of half-an-hour. This machine could be used to determine a predisposition to deep vein thrombosis (DVT) and the examination could take place in an airport lounge while waiting to board your aircraft. What strategies can we adopt to manage and adapt to this rapidly changing context? I am going to speak in turn about each of the following issues. First we need to make some educated guesses about where genetics is headed. Second we need to have processes that involve broad community participation. Third we need to find an appropriate balance between the many competing interests. Fourth we have to involve people from many disciplines not just lawyers or doctors. Fifth the global dimensions of these issues involved will create on-going challenges. Sixth we need to have flexibility not simply hard and fast laws. Seventh we need appropriate institutions to achieve these goals. And finally we need to agitate—more of that later. [Slide 12] Where is genetics headed? I am not a sibyl nor a soothsayer nor a seer. But we do have some idea about the likely challenges and pressure points on human genetics in the short- to medium-term. [Slide 13] Challenges are posed by expanding technology. For example micro-array technology will enable large numbers of genetic tests to be conducted simultaneously. Consequently the cost of individual tests is likely to fall and the speed of testing is likely to rise. This may kansas refinance mean that we are able to test in circumstances where it would not otherwise be possible for example border controls at airports. There is developing medical understanding of the gene kansas refinance tics of common diseases such as asthma and diabetes. Developments in genetics will most likely yield a better understanding of non-medical traits such kansas refinance as addiction and aggression. The increasing role of population genetics and genetic screening will change the way in which genetics is regarded. We must consider the large and increasing capac kansas refinance ity of bio-informatics to link data from various sources thereby creating new kinds of data because of the capacity to make linkages that previously were unavailable. As has been much discussed today there will also be pressures from commercialisation whether from pharmaceutical companies governments trying to sell the genetic material of their citizens or individuals trying to patent a particular genetic sequence that they themselves possess. One important aspect of the way in which th kansas refinance ese developments are managed is to have processes that involve substantial community participation. [Slide 14] It is possible to produce new laws in the cloistered environment of an ivory tower surrounded only by books and periodicals by learned professors. It is possible but not desirable however because there are significant benefits that flow from the involvement of a wider community. There are benefits for the people consulted because of the educative value of civic participation in an area which requires lifelong learning. There are benefits kansas refinance for the process of law reform because experts can tell you about the practical operation of the law which is often quite different from the case law or the statute books. Experts can provide technical advice about the ways in which proposed reforms might operate in practice. Furthermore community participation will ultimately provide better outcomes because the implementation of refor kansas refinance ms is more likely to be successful if the consultation process involves those who will be affected by the rules or regulations. Another factor is the need to find balance and compromise [Slide 15]. Many issues in human genetics provide an arena of contested interests this will always be the case. For example there will always be m kansas refinance edical researchers who are so convinced about the benefits of their research that they are not interested in regulations that impede the progress of that research. Conversely there are individuals who are so adamant about the dangers of ‘mad science’ that they are closed to the potential benefits of further research. It will always be possible to find a putative father who seeks DNA parentage testing in order to assert his ‘right’ to know who his biological offspring are irrespective of the interests or consent of the child or the mother. On the other hand there will always be mothers who unreasonably withhold consent to DNA parentage kansas refinance testing even when it might be in the interests of the child to resolve a parentage issue. We need to find a resolution of these competing interests. However this resolution will not be the same for all societ | |||||||||||||