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Health as a genetic planning project: Enthusiasm and second thoughts among biomedical researchers and their research subjects

Stefán Hjörleifsson, Roger Strand & Edvin Schei

Abstract

This paper presents an interview study among scientists working with Decode genetics in Iceland and lay individuals having recently donated blood to Decode. While genuinely enthusiastic that genetic technologies hold great potential to avert disease, the informants shared concerns that extensive predictive genetic testing, preventive treatment and tailoring of lifestyle to avoid potential disease may cause loss of freedom - people can "worry themselves sick". Undiscriminating use of genetic technologies in privileged populations was seen as a potential source of injustice and reduced tolerance of diversity. Both lay informants and scientists revealed ambiguity and inconsistency in their personal evaluation of genetic knowledge, indicating that'rational choice' models do not predict how people relate to information about risk, expert knowledge notwithstanding. Drawing on work by Wynne and van Hooft, we submit that our informants' ambivalence and second thoughts are implicit contradictions of prescriptive messages accompanying human genetics - i.e. more or less covert and non-intentional claims about the rational obligation to minimise the likelihood that one falls ill and a strictly biological conception of health. Genetic technologies designed to prevent or combat organic disease can interfere negatively with non-biological levels of health. It is a challenge of reflexive modernity to untangle the interaction of human genetics with culturally mediated categories of relatedness, purpose and meaning in everyday life, and mobilise cultural and governance resources which can ensure that genetic technologies support human subjectivity and health in their full range.

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