Genetic Genie May Grant Wishes We Don't Want
Sydney Morning Herald
Tuesday August 8, 2000
The dilemma over insurance policies shows that society needs more time to understand the implications of genetic testing, writes Trevor Mudge.
The Australian Medical Association's view that there needs to be a moratorium on the use of genetic testing for the purposes of insurance is predicated on the view that genetic tests are different from other medical tests.
As consumers, we all want lower prices. Life insurance companies already offer lower premiums to non-smokers. Why not extend this to those at low risk of certain diseases as revealed by genetic tests?
There are three characteristics of genetic tests which make them different. Firstly, genetic tests by and large are about chances and risk. They rarely give absolutes. Mostly a genetic test can be interpreted as giving an individual, say, a 50 per cent chance of developing a certain disease over his or her lifetime. Of course many medical tests deal in uncertainties. Genetic tests are just more uncertain than most.
Second, and perhaps most importantly, the results of genetic tests are applicable not just to the individual tested, but they have implications for the other members of the family as well. These implications also apply to future generations within that family. By and large, in order to accept the need for a medical test or a medical course of treatment, it is important for patients to understand all the implications of that test or treatment. Such informed consent may be difficult to obtain from an individual if we do not know all of the future implications. It is impossible to obtain consent from all family members who might be affected, especially those yet unborn.
The third problem with genetic tests is that the implications known today of a particular test are changing rapidly with time. For example, a test which today may give you, say, a 50 per cent risk of cancer of the ovary, may be found next week to also give you, say a 25 per cent chance of a cancer such as leukemia.
Of course, in this day and age information is power. But it is only power when we are able to act on the information. The information that you may be at risk of cancer of the ovary allows you to consider the surgical option of removing your ovary. The implication that you would have a 50 per cent risk of Huntington's chorea leaves you far more powerless. This unpleasant degenerative disease of the nervous system, causing death, begins in middle age and there is no strategy for minimising its risk if you carry the gene.
In one sense, genetic tests are a bit like a crystal ball. Over the next decade or two the mist within the crystal ball is going to clear and an increasing number of genetic tests will be available to enable us to look into our future.
This is a mixed blessing. It is important to understand that genetic testing is new technology. The publication of The Human Genome, not to mention other research, is going to produce an exponential increase in the next decade of diseases for which genetic tests will be available. The crystal ball will clarify markedly.
The potential for insurance companies and employers to discriminate against individuals on the basis of genetic tests and their subsequent risks of disease will equally rise exponentially.
At present there are only a few individuals in society whose lives have been touched by the implications of genetic testing. Awareness of its implications is therefore quite small.
Society needs to be given the opportunity to get more experience with the implications of genetic testing before it considers whether or not to allow insurance companies the right to either request new genetic tests or obtain access to existing ones.
The application from insurers currently before the Australian Competition and Consumer Commission to allow the industry to propagate a policy of not requesting that new genetic tests be undertaken to qualify for, say, a lower priced policy should be approved.
Certainly, it may reduce competition among the players in the industry and it may not lead to lower prices. However, every lower-price policy has to be balanced with one with a higher price or no policy at all. The risk may be so high for some that insurance will be denied. Perhaps the community should have that risk spread among its members more widely, much as currently applies to private health insurance.
© 2000 Sydney Morning Herald