The Human Genome Project (HGP) is presented as a spectacular scientific event, a fait accompli, a marvellous unravelling of nature rivalling Vesalian anatomy. The social scientist is then summoned along with the theologian to comment like bit actors on issues of inequality, diversity or the sanctity of nature. Such a sequence of events assumes that the social enters after the science is complete. But if we view science as a process, then questions of ethics, equality, humanity, attitudes to nature enter at every phase.
The genome project was an act of "big science". Biologists were often envious of what the atomic bomb and elementary particles had done for physics. When Robert Sinsheimer of the University of California at Santa Cruz put forward the idea of an institute for sequencing the genome, his dreams were two-fold. One was the dream of big money for biology and Santa Cruz. The other idea was that physics' reductionism would yield similar dividends in biology.
Sinsheimer's project failed, but the department of energy (DoE) entered the act. DoE, a splinter of the Atomic Energy Programme, had a long-standing interest in radiation, in genetics and mutation. The first big funding for HGP came from DoE. At that time itself, there were fears of Nazi eugenics and warnings about what insurance companies might do with the data. Many molecular biologists were suspicious of DoE forcing biology into the ways of big physics. One scientist who was sceptical of this trend was James Watson.
Jim Watson is the HGP's icon. A Nobel laureate, with an adolescent competitiveness celebrated in the bestselling The Double Helix, Watson also realised that it was the interests of medicine that would drive the HGP. In the fifties, antibiotics was the order of the day and genetics was a backwater. But as the old diseases were being wiped out, genetics and ITS relation to disease was making a comeback. Tom Wilkie in Perilous Knowledge notes that while Watson was sensitive to the genome project being part of the global commons, he brought to it his own unique style. He was also aware of the unequal division of labour in science, in the work and funding of the project.
The question soon arose around who owns the genome project and who owned which stretches of it, as Britain and the US began callously patenting sequences. While the political debate continued, the patenting proceeded faster. Present in this disease-driven theory of nature was a theory of language. Genomes were read as linguistic sequences and diseases were read as spelling mistakes. But when disease is seen as a spelling error, the notion of suffering changes. Nature is no longer seen as wise, but as making mistakes. It is a view of nature as a bumbler that is implicit in the HGP.
The question of privatisation soon led to the question of privacy. The genome project required huge screening of select populations. But in such programmes, certain genetic traits were read as weaknesses or as stigmata. Screening then becomes a political problem which raises issues of psychological pressure and of privacy. Insurance companies wanted access to records. The ethical question is whether genetic information should be a part of the medical records that insurance agencies could have access to. Such access to records might stigmatise these persons and make them even more vulnerable as insurance agencies often switch off coverage to these sectors. What is coercive at the level of the personal becomes even more lethal at the social level. If the Emergency were imposed again, would a technocratic Jagmohan be more devastating with free access to genetic records of particularly vulnerable populations?
The lifecycle of the genome project from conception to execution to completion hinges on issues of vulnerability, dignity and equality. How do we know when we should terminate a life? The other question is what kind of knowledge does the genome project provide? Do we now argue as many scientists do that "we are now what we know". Francois Jacob once remarked: "the only logic that biologists really master is one-dimensional. As soon as a second dimension is added, not to mention a third one, biologists are no longer at ease." It is this lack of ease that underlies the HGP.
The genome is a map or at best a catalogue. Pushed beyond limits, it might magnify or overstate the power of biology at the societal level. We may reduce IQ to genetics. Also eugenics as an idea lurks in the recesses of every society. The danger is not of tyrants and technocrats alone but in the fact that democracy has been most susceptible to eugenic theories as the records of US and UK prove. It sees it as a technical fix to vexing questions of inequality and disease and violence.
Ivan Illich once observed that the concept of life is the last stronghold of western humanism. If it is banalised, appropriated or equated with a reductionist theory of the gene, then a whole system of philosophy and ethics collapses to obscenity or emptiness. The genome project is one of the great maps. But like all maps it is the less-than territory. It does not exhaust nature or the question of life which is bigger than ITS 3 billion base sequences.
The task before us is simple. While celebrating the science, we need to realise that applying a map is an art form of ITS own for which science may not be the best answer. We need an ombudsman for the genome projects. We need civil rights teams to institutionalise referendum and recall of projects. We must institutionalise small groups to monitor screening of populations just as we monitor the fate of an election project. We need not be Luddites but we must rework it into the democratic imagination, as a challenge, as a morality play, as a philosophical marker to the ethical questions that marks the beginning of the 21st century.
