Rules Are Needed On Genetic Testing
The Age
Saturday July 22, 2000
THE latest revelations about possible discrimination against healthy Australians based on genetic tests provide a timely reminder of the social implications of scientific progress. The pace of technological development is becoming increasingly difficult to quantify, as researchers build upon each advance in fields such as computing and biotechnology. There is also a global dimension to the accumulation of knowledge; the Internet has made it harder for corporations, scientists and governments to keep secrets. Indeed, the Internet itself is a paradigm for the changing world, ignoring and defying national and cultural boundaries. The problems that sovereign states have with regulating the World-Wide Web, which offers unprecedented amounts of hitherto inaccessible information, are being replicated in other fields.
Most notable of these is the area of genetic testing. New research by David Keays of Melbourne University has documented six cases where Australians have been asked to undergo testing in order to qualify for such things as jobs and bank loans. In one case, an 18-year-old man could not be considered for a public service position unless he passed a test for Huntington's disease, which his mother had suffered. The man stood his ground and refused to take the test, preferring not to know whether he could expect to be stricken by the disease when he reached middle age. Eventually he got the job, but with reduced superannuation. This case in particular points up the perverse results of efficacy in genetic testing - a perversity that will expand exponentially as the knowledge gained through the recently completed human genome project is given practical application.
The central question is: should one's physical fate, in the form of each individual's genetic ``stamp", be identified, assessed and then used to form economic and social judgments? Unchecked, genetic tests could amount to the scientific quantification of a single person's worth. Accurate determinations of each person's likelihood of contracting specific medical conditions have already been used to assess degrees of risk for insurers, superannuation funds and potential employers.
The Howard Government professes to be aware of the potential for discrimination; Attorney-General Daryl Williams has asked for more information on the issue. But Australia already lags behind Europe and most American states in the application of anti-discrimination laws in this area. For the government, it should be a straightforward matter. Science must be used to improve the quality of life of each individual and not to consign any of us to a second-best existence. The government should treat this as a matter of urgency and establish guidelines that protect people who are already vulnerable to exploitation.
© 2000 The Age