Beyond pessimism: The dialectic of promise and complexity in genomic research

Abstract

How should we reflect upon the last 10 years since the completion of the human genome? One dominant response from within the humanities and the social sciences is to cast these events within a dialectic of promise and disappointment. Indeed, this contrast would seem to hold if we take Clinton's historic announcement as our point of departure. I choose an alternative departure: not in the rhetoric of press releases but from scientists' ambivalent accounts of complexity. Perhaps a dialectic of promise and complexity is a less pessimistic (but no less sceptical) way of reflecting on what has happened in the last 10 years. In this paper, I focus on two aspects of societal change within the 'urban zone': the rise of population-based biobanking and the marketisation of genetic susceptibility testing. Both developments are driven by the promise that genomic research will lead to new ways to 'prevent, diagnose, treat and cure disease'. However, genomic knowledge also reveals a level of complexity that has led to unprecedented scale in the production of granular information. In the last 10 years we have seen that traditional bioethics has struggled to cope with this scale. In the era of high-throughput sequencing and personal genomics, we have also seen that translating complexity into benefits for the health consumer is controversial. Arguably, ethical principles do not capture the subtle differences between predictive and susceptibility testing, and that more empirical research is needed to understand how people perceive and communicate complex risk information.