Genomic information and the public-private imbalance.

Author:Coban, Aykut
 
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Introduction

The 'genome race' between the Human Genome Project (HGP) of the publicly-funded International Human Genome Sequencing Consortium and the privately-funded Celera Genomics Corporation, the latter founded and led by Craig Venter, had a happy ending. (1) There was an official joint announcement of the completion of the first survey of the human genome at the White House in June 2000. (2) What was initially thought of as 'a clash of ideologies and sequencing strategies, academia against big business, public ownership versus private entrepreneurship' (Davies, 2002: xi) was, in the end, presented as 'a marriage between public funding and private entrepreneurship' (Jasny & Kennedy, 2001). The accomplishment of the mapping and sequencing of the human genome was represented as a celebrated success story for public-private cooperation. This view of the competition-cooperation oscillation is predicated on the notion of there being two firmly separated public and private planes. The pitting of the two spheres against each other is based on competing and conflicting connotations such as public/national interests, solidarity, distributive justice, openness, inefficiency and slowness on the public side; and individual interests, injustice, enclosure, freedom, entrepreneurial qualities, efficiency, productivity and speed on the private side. What follows from this, then, is the suggestion that the success of the genome undertaking lies in the reconciliation of the distinct qualities embedded in the public and private spheres: Celera's sequencing method was very fast, but the time-consuming sequencing method of the HGP made the research outcome more reliable; the speed of Celera, which declared the job complete in three years, pushed the HGP (launched with a fifteen-year plan in 1990) to speed up and become more efficient by obtaining more public funding in order to catch up with its rival. Equally, the HGP provided us with unrestricted, open access to the produced genomic data, undermining the company's selfish attempts at profit-making from the data (Dennis & Gallagher, 2001: 32; Jasny & Kennedy, 2001; Davies, 2002: xiv).

So we are told that the two research efforts to sequence the human genome not only contributed to each other's work in technical terms, but that the end product was an indication of a political balance between private interests and public benefits for the common good. This idea was reinforced by Prime Minister Tony Blair, who announced via satellite at the White House: 'We, all of us, share a duty to ensure that the common property of the human genome is used freely for the common good of the whole human race' (Blair, 2000). In a similar vein, it is generally agreed that the justification for the existence of intellectual property rights (IPRS) over genetic information and materials is based on the idea of the public-private balance. This constitutes rewards and incentives for inventions and innovations (private interests) on the one hand, and the diffusion of knowledge and technology (public benefits) on the other. Through balancing mechanisms, it seems as if everyone is better off.

However, in this article I revisit the public-private divide to show that the supposed balance is in fact an unbalancing act in favour of private interests under the capitalist social formation. To this end, I shall raise two interrelated points. The first concerns the importance of this information in providing the justification for public spending on its production. The second concerns the problem of ownership and accessibility. If genomic information is so important that taxpayers' money is spent in order to produce it, how can proprietary rights bound to limit its accessibility be explained? I shall not attempt to contribute to long-established, well-developed theoretical discussions about the formal separation between public and private spheres, the political and the economic, the state and civil society, and sovereignty and property rights. Rather, I will investigate the extent to which the public-private relationship produces unbalancing effects in the case of the generation and use of genomic/genetic information.

From genome to public benefits: An easy path?

The media usually draws a mathematical equation between genome sequencing and public benefits. Following the publication of draft sequences of two subspecies of rice, a British newspaper recently reported that 'Rice DNA finding will transform how the world is fed' (quoted in Cyranoski, 2003: 796), as if hunger were a genomic problem. Similarly, the importance of human genome sequencing has always been based on high expectations on the political front. President Bill Clinton hailed this scientific breakthrough as 'the language in which God created life'. He suggested that 'with this profound new knowledge, humankind is on the verge of gaining immense, new power to heal' human diseases (White House, 2000). This emphasis on the public benefits of genomic information is not merely confined to popular and political jargon. In scientific literature, too, it is described as 'the most precious collection of information imaginable' on the grounds that, since we can now read the instructions for making human beings, human genome sequence information is at the pinnacle of the realisation of self-understanding of humanity on the one hand, and a technical achievement promising disease diagnosis, therapy and prevention on the other (Dennis & Gallagher, 2001: 7-8). From the very inception of the HGP, the scientific value of human genomic information was repeatedly constructed on the basis of these two benefits (Keller, 1992: 294).

In fact, the formal objectives of the project were the sequencing and mapping of three billion DNA bases in the human genome, and the development of the methods and technology with which to do this. Human genomic research was conceived in the us Department of Energy (DOE) in the mid-1980s in order to understand the mutagenic effects of exposure to radioactive and other toxic waste. DOE involvement in microbial genomic research was encouraged by the possibilities of genetically engineering certain bacteria for the purposes of waste control and environmental cleanup. As the DOE's research initiative with the involvement of the us National Institutes of Health (NIH) became a publicly-funded mega-project to sequence the whole human genome, its public benefits were also expanded from being 'a cleaner environment' to 'unravelling the mysteries of life', 'knowing ourselves', 'revolutionising genetics' and 'thwarting diseases' (Human Genome Program, 1996: 2-6). Establishing a direct link between the HGP and genetic therapy on scientific and political fronts would justify its use of public funding. According to James Watson, the first director of the HGP, 'Congress actually seemed to like the human genome program because it promised to find out something about disease'. The logic behind the justification of the publicly-funded HGP as presented by Watson is simple: since many diseases, including Alzheimer's, manic depression and even alcoholism have a genetic cause, and since the HGP comprises genetic research helping to discover the genes involved in genetic diseases, public funding through the NIH, whose objective is 'to improve American health', is being properly used for the public good (Watson, 1992: 165-7).

This logic is problematic at every point. First, bald claims about the genetic causes of diseases resonate with gene reductionism. In biology, a gene is a stretch of DNA that consists of adenine, guanine, cytosine and thymine bases, represented by the letters A, G, C, and T respectively. The reading of the order of the four letters gives the 'genetic code'. When it is claimed, in a reductionist fashion, that the genetic code contains the instructions by which a human being is made, the HGP becomes an attempt 'to explain people our physical and our social presence, by going back to the seed, the moment of zygotic zero, when sperm joins egg' (Rothman, 2001: 19). Since some of us are alcoholics, there must be a gene for it, since it is the genetic code that makes us individuals. However, even if an 'alcoholism gene' were identified, its effects would be different in different people embodied in different time-space contexts. Even when the gene associated with a single-gene disease is identified, the cause-effect relationship is not straightforward. Consider the 'cystic fibrosis gene', which has been located and sequenced. Although the disease is said to be caused by a mutation to a gene on chromosome seven, there are actually more than 850 identified mutations, deletions and insertions leading to the altered function of the protein (3) responsible for the disease. The gene becomes active in some individuals but is recessive in many others, who show no adverse symptoms. And yet research has shown that its symptoms are also related to socioeconomic status, diet and exposure to infectious bacteria (Nossal & Coppel, 2002: 90; Bowring, 2003: 153-4; Ho, 1999: 227). In this way, the reductionist understanding of the static sequence of the genome fails to see the complexity of the multifaceted and dynamic relationships between genes, organism and environment (natural and social). (4)

This brings us to the second flaw in the view equating the HGP with public health. The HGP has provided us with the map showing the location of genes on chromosomes and with their sequence information. Some disease-associated genes can be identified and placed on the chromosome by using the genomic data. However, as John Sulston, one of the scientists involved in the HGP, points out, too little is known about how genes actually work. Having the inventory of genes to hand, 'each gene has now to be painstakingly examined to identify its role. The gene list will be constantly scrutinized by people who are looking at systems in the body' (Sulston &...

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