Genomics and self-knowledge: implications for societal research and debate

Abstract

When the Human Genome Project (HGP) was launched, our genome was presented as our 'blueprint', a metaphor reflecting a genetic deterministic epistemology. Eventually, however, the HGP undermined rather than strengthened the understanding of genomes as blueprints and of genes as ultimate causal units. A symbolical turning point was the discovery that the human genome only contains 22,500 genes. Initially, this was seen as a narcissistic offence. Gradually, however, it strengthened the shift from traditional genetics and biotechnology (i.e., gene-oriented approaches) to genomics, i.e. genome-oriented or systems approaches, emphasizing complexity. The 20th century can be regarded as the century of biotechnology and of the gene. Its history demonstrated that the will to know (notably: to know ourselves) has never been a disinterested affair: it is driven by a will to improve (notably: to improve ourselves). In this article it is claimed that, as genomics takes us beyond a genetic deterministic understanding of life, this must have consequences for societal research and debate as well. Policies for self-improvement will increasingly rely on the use of complex interpretation. Therefore, the emphasis must shift from issues such as genetic manipulation and human enhancement to issues involved in governance of novel forms of information.

Expertise, empathy and ethical awareness: ideals of genetic counseling based on framing of genetic information in international guidelines

“…Zwart (2007) requires that the debate of genetic information is moved into the twenty-first century, instead of addressing challenges like genetic determinism that were popular in the 1990s, but are now outdated.…”

The Obliteration of Life: Depersonalisation and Disembodiment in the Terabyte Era

“…In the 1990s, HGP purported to shed light on the question Who are "we"? (Zwart 2007). HGP director Francis Collins claimed that "the human race" was about to "witness its own blueprint in fine detail" (1999,28).…”

Genomics and identity: the bioinformatisation of human life

“…The Human Genome Project (HGP) can be regarded as the most recent in a whole series of narcissistic offences (Zwart 2007a), first of all because of the surprisingly small number of genes on the human genome (in comparison to other, apparently less complex ''model'' species such as worms, flies and plants), but also because of the surprisingly small differences between the human genome and the genomes of other mammals such as the chimpanzee or the laboratory mouse. Whereas initial estimates concerning the number of protein-coding genes on the human genome ranged from *100,000 up to *200,000, it was eventually concluded that the human genome contains something like *22,500 genes, which was something of a surprise.…”