Issue 227 of SOCIALIST REVIEW Published February 1999 Copyright © Socialist Review
One of the distinctive features of capitalism is its tendency to turn everything into a commodity. The latest item to come on the market is nothing short of the rights to the genetic information, plus the medical and family histories, of the entire population of Iceland.
The sale was voted through at the end of last year by the Icelandic parliament. The buyer is deCode Genetics, a private company based in Reykjavik, but whose funding comes mainly from US investors. However, deCode has recently signed a $200 million deal with the Swiss pharmaceuticals giant Hoffman-LaRoche, which will gain exclusive rights to use the information to probe the genetic origins of a number of common diseases.
A thousand years of near isolation coupled with meticulously kept records going back centuries means that Icelanders offer special opportunities for the study of genetic diseases. The deCode company says it will use the information to develop new drugs. The MPs who voted in favour of the deal say that it will bring prestige to the country and create many new jobs. Yet the decision to sell the information has created enormous controversy and widespread opposition in Iceland itself. Already many doctors and scientists have threatened to sabotage the transfer of the records.
Opposition is partly based on fears that there are insufficient guarantees that individuals' records will be safe from prying eyes in the future. But the sale has also raised major questions about how much ordinary people stand to benefit from genetic research, or alternatively how much it might be used against them.
The specific objections are based upon the claim that there are inadequate safeguards to protect the rights and privacy of the people involved in the study. For example, Icelanders will not be asked if they consent to their records being used in the creation of the proposed database. In answer to criticism, there is now some space for objectors to opt out.
A major objection concerns the way the data is being collected. People will be identified by a code rather than being made anonymous. But this leaves open the possibility that the genetic and medical information could he traced back to particular individuals. Finally, Icelanders will be denied the right to choose whether they want to receive information from geneticists about potential risks to their future health.
The sale has also triggered more general objections about the increasing commercialisation of genetic research, particularly in the US where state funding has been cut and biotechnology companies input growing.
The question of how much ordinary people stand to gain from genetic research cannot be separated from the profit motive at the heart of the pharmaceutical industry. In Iceland deCode Genetics is offering free pharmaceuticals as a sweetener for participation in its study. But this will be a trifling amount compared to the billions the company stands to make from the drugs it develops from the study. In plant biotechnology there has been widespread anger at the way multinational companies have obtained rare plant genes at a fraction of their value from Third World countries, which then cannot afford to buy the products produced in this way.
The commercialisation of biology is not just a question of private companies creaming off knowledge and products that should belong to everyone. It also affects the likely application of future discoveries. One possible application is in screening people for 'genetic tendencies' to a particular disease.
Here some caution is required. Socialists rightly reject the notion that the complexities of human behaviour are primarily determined by our genes. But even in the case of physical diseases the situation is a complex one. For rare conditions like Huntingdon's disease, a single gene is involved. Even here a cure is still awaited, despite the fact that the gene responsible was identified some years ago. But the pharmaceutical companies are claiming that we will soon be able to screen for, and thus prevent, much more common conditions like cancer or heart disease.
Such a claim ignores certain basic features of these diseases. It disregards the role of the environment. Thus it ignores the proven role that pollution plays in triggering cancer, or the fact that heart disease is brought on by poor diet or stress. Even where a genetic component is identified, it is necessary to be cautious. The discovery of two different genes linked to breast cancer was rightly welcomed, although the discovery was somewhat marred by a squabble over which of the research groups involved got the patent rights. It has become clear since, however, that firstly the genes only account for 5 to 10 percent of breast cancers and secondly that having a defect in these genes does not automatically lead to cancer. Such caution is important because an over-emphasis on the role of genetic factors could lead to a downplaying of the considerable role of the environment in triggering breast cancer.
It is possible that at some time in the future a fully comprehensive, publicly administered screening programme with in depth counselling to accompany it, could be a valuable preventative health measure. Unfortunately the screens based on the breast cancer genes currently being developed for profit show no sign of acknowledging the complexities of the link between genes and disease.
Even more worrying than inadequate tests is the possibility that genetic testing for 'defective genes' might be used by insurance companies and employers as a means of discrimination. This is particularly an issue in the US, where there is no national health service and where many employers are also the source of health insurance.
It is an indictment of the system we live under that information that ought to he available for human benefit might instead be used against us. It begs the question of how socialists should respond to the commercialisation of science. The sort of scientific developments which we have seen over the last few years, such as cloning, which have the potential to revolutionise areas of medicine like transplant surgery, stand in contrast to the chaos and confusion of the capitalist money markets. The case for a rational society, capable of dealing with such fantastic potential, could not be greater.