Research in human genetics has already led to the development of a few tests which reveal with varying degrees of accuracy individuals, at the time of testing without symptoms, who will in due course die from or be seriously debilitated by an inherited disorder. Future research will undoubtedly produce more, probably many more, tests for predisposition to genetic disease.
Those in favour of such predictive testing believe it will be clinically beneficial since it will give the opportunity to prevent or delay the onset of the disorder, to treat it more effectively at an earlier stage, and make it possible for patients to make informed decisions about having children. Others are less optimistic. They are concerned that there may be potential disadvantages including intrusions of privacy and confidentiality. They are also concerned about the possibility of inaccurate predictions and discrimination in employment and insurance.
Life insurance is based on the premise that among the pool of those insured some will die but there is no way of knowing which ones. Already some insurances exclude those taking part in high risk activities or with known medical conditions. Assuming that genetic testing develops to the point at which a reasonably reliable age at death (excluding accidents) can be estimated, the whole basis of present day life insurance would be totally undermined - if insurance companies had access to and were allowed to use such information.
There are those who would like to stop genetic testing or at least the development of new tests. This is not possible. Apart from depriving people in families with known genetic defects of vital information, it would require international agreement and co-operation far beyond any achieved so far and a world-wide policing system.
However, legislation to control the use of genetic testing information might be possible in order to restrict discrimination in employment and insurance. The problem is how far such legislation could go, or be effective, in a free society. While there might well be agreement that those disadvantaged by their genetic make-up should not be penalised, those people who knew they would live to pensionable age would be inclined to take out accident only insurance. The pool then left could, in time, consist only of those people who knew they would not. The resulting premiums would then be well beyond the reach of most people.
Such a position is unlikely to be reached suddenly or in the immediate future. More probable is a slow build-up of knowledge that insurance companies could use. Since their profits and those of their clients holding with-profit policies depend on the companies paying out as late as possible, there is little doubt that they will try to use such information as it becomes available. In the long run, decisions on the control and use of information obtained by genetic testing will have to be made by society after full discussion of the issues. This discussion has already begun in the United States (Ostrer et al, 1993) and while their experience is no doubt different from that of other countries the future consequences of the expansion of genetic testing will be of increasing importance everywhere.
John Timson
Reference:
Ostrer et al, American Journal of Human Genetics, vol 52, p 565, 1993.