Our Genes: Biotechnology and Icelandic Society
(Reykjavik: Forlagid,
2002)
Genin okkar: Líftæknin og íslenskt samfélag
© Dr. Steindor J. Erlingsson
steindor (at) akademia.is
The Iceland based US biotechnology company deCODE Genetics has had a major impact on Icelandic Society since it started its operation in 1996. In February 1998 the company started to exert its force when it signed a big contract with the pharmaceutical company Hoffman La Roche. In December that year the company became an integral part of the political scene in Iceland when the Icelandic parliament passed a law giving deCODE an exclusive right to use Iceland’s extensive medical records to construct a database that will be connected to genetic and genealogical databases. The Icelandic media has to date been very uncritical of the company and only a fraction of scholarly community has voiced concerns that have been in vane. The reason for this development is that when the company is criticised, it is also a direct criticism on the centre-right government in Iceland. Due to the close ties between deCODE genetics and the government critical voices, dealing with scientific and political aspect of the company, have been paralysed. The aim of my book, which is written in Icelandic, is to rectify the skewed picture Icelanders in general have of the possibilities of genetics and an absolute lack of bio-political dialogue in Iceland. Hence the book is aimed at both the academia and the general public in Iceland and is as such a pioneering work. While I was writing this book deCODE’s spokesmen repeatedly put pressure on my publisher in order to prevent the book from being published.
ABSTRACT
This chapter details my view of the integration of deCODE Genetics into Icelandic society. I delivered a paper on the deCODE saga at a conference in Paris in February 2001 entitled “How a big company can distort and manipulate a small gullible society”, where this story is presented in English.
The gene has had a firm grip on our imagination since Wilhelm Johannsen coined the term in 1909. During the last decade or so the power of this concept has reached its peak as is exemplified by the fact that the gene has become an integral part of public discourse. The reason for this lies obviously in the hopes that scientists and the public alike had for the Human Genome Project. Uncritical media that often portray the gene as the great absolver of human misery inflamed these hopes. This purblind view of the power of the gene has been heavily criticised in some circles. The American geneticist Richard Lewontin has been at the forefront of this debate since the birth of biotechnology in the early 1970s. He has criticised the reductionism that lies at the heart of the genetic determinism that often informs the gene discourse. He has emphasised that the development of the organism is the result of a complex interplay between the genes and the environment. Lewontin’s criticism seems to be vindicated by the results of the Human Genome Project.
Mendelian genetics and molecular biology merge in a very interesting way in the lung disease cystic fibrosis. In contrast to most human ailments that are result of a complex interplay of unspecified number of genes and the environment, a single recessive gene only causes cystic fibrosis. The CF-gene was sequenced in 1989 but in spite enormous efforts a cure based on the genetics of disease is not in sight. In light of this it can be doubted that a genetically based cure can be found for more complex diseases. If cystic fibrosis shows the limited applicability of reductionism to the human condition the results of the Human Genome Project devalues it even more. One of its most striking results was that humans have only around 30.000 genes, which is only one third above the number a simple worm has. As a result the gene number cannot explain the difference in complexity between these two species. One of the mechanisms that can do so is alternative splicing of the pre-RNA molecules that are produced when a gene is translated. This enables a single gene to produce numerous mRNA variants that results in the production of slightly different proteins. The current record holder is a gene in Drosophila that can produce 36.106 variant mRNAs. This means that even though a gene is located it can be very difficult to relate a mutation in it to a protein.
The reductionist program in genetics has been dealt a sever blow and when it is taken into account that the 1998 Nobel winner in physics, R.B. Laughlin, talks about the “End of Reductionism” in physics, biologists better rethink their position. This might be difficult for biologists and natural scientists in general, since reductionism has been an integral part of our culture since the Enlightenment. In light of this historical burden it is interesting to take note of how reductionism in the natural sciences has evolved. The goal of Enlightenment thinkers like Holbach was to apply a reductionistic view of the physical world to the social world. In the preface of his System of Nature (1770) Holbach points out that “the most important of our duties, then, is to seek means by which we can destroy delusions that can never do more than mislead us. The remedies for these evils must be sought for in Nature herself.” Hence the physical and social worlds were integrally connected. But the natural sciences today are present as devoid of the political aims of the Enlightenment and today many natural scientists, armed with reductionism, view themselves as the seekers for objective truth that is not tainted by politics. This view was heavily defended in the Science wars of the last decade.
The dualism that lies at the heart of the division of the world into an objective and subjective parts bears striking similarity to the religious duality of the body and the soul. David Bloor pointed this out in his seminal book Knowledge and Social Imaginary (1976). With reference to Durkheim’s work Bloor notes that religions divide the world into the sacred and profane and how the profane world is governed by the untouchable and scared world. By drawing an analogy from this fact Bloor portrays how the natural sciences are based on the same premise. We tend to draw clear lines between the natural sciences and technology, serious and routine science and serious and popular science. In this sense the natural sciences are sacred and technology profane. Bloor argues that the reason for this division between the sacred and profane is that the sacred portrays the ideal world we want to live. Hence reductionistic science and reductionistic politics are just the opposite side of the same coin. But Bloor points out that this social imaginary in our scientific worldview comes through tacitly since the social threads that infiltrate our view of knowledge are to complex for individual to weed them out. This will be illustrated with examples.
We live at a time that is dominated by individualism and capitalism. Globalisation is decreasing the possibilities of European governments to tax companies and owners of financial capital in order to maintain the welfare system that is already under pressure from increased average age of Europeans. It is into this climate that the biotech industry plans to introduce genetic tests and personalised medicine and by doing that taking the individual away form his social context. If the dream of the gene-apostles goes ahead this reductionistic medicine will introduce numerous gene tests into our society (the British government has already permitted insurance companies use two gene tests to assess insurance premiums) that will deem people sick without them having any symptoms. The idea is that the individual starts to take medicine as soon as the “bad” gene is diagnosed, to prevent him from getting the disease he is predisposed to. This will put a huge strain of the welfare systems in Europe since it will dramatically increase an already huge drug bill. This will also undermine the key incentive behind any insurance system, i.e. that the individual does not know when something unfortunate happens. In our individualised societies the “healthy” majority is likely to react against expensive therapies that a “sick” individual might have to be on all his live. When increased individualism, globalisation, increased average age is mixed with genetic medicine the welfare system will crumble, leading to the US model of private health insurance. Based on the genetic discrimination that will ensue we might end with society where a big portion of it will not have any health insurance, as is currently the case in the US, where 40 million individuals are uninsured. This show vividly that reductionism in biology is just opposite to social reductionism on the reductionism coin.