In Pursuit of Certainty: Making Sense of Direct-to-Consumer Personal Genome Testing in Australia

Abstract

Advances in genetics and genomics provide new and powerful ways for individuals to understand their past and predict their futures. These technologies are now available in the marketplace and are extensively promoted to consumers. Although some may see this as representative of the inevitable and valuable democratisation and dissemination of biomedical knowledge, it is not unproblematic. Importantly, there is often a discrepancy between consumer’s expectations of what personal genome tests may provide and the explanatory power that they find they have. In this thesis, I present findings from a mixed methods research project that explored Australian consumers’ beliefs, knowledge, expectations and experiences of direct-to-consumer personal genome testing (DTCPGT). This research involved an online public survey, in depth interviews with consumers of DTCPGT and an autoethnography. The results of this research reveal that while DTCPGT may have value, both for consumers and for society, this is contextually dependent. Importantly, seeking DTCPGT appears to be best understood as a process of ‘securitization.’ That is, an individual will seek genetic knowledge about their self through DTCPGT because they believe it will enable them to confirm ‘certainties’ about their life and to decrease ‘uncertainties’. The reality, however, is that DTCPGT often acts to increase uncertainty and compel further information seeking. In part this is because scientific/genetic knowledge is limited; because data always reveals uncertainty; and because we may place too much faith in the relevance and power of genetic information and do not recognise the importance of our social networks and life-stories