Savard, Jacqueline1, Mooney-Somers, Julie1, Newson, Ainsley J1, Kerridge, Ian1
1 Centre for Values, Ethics and the Law in Medicine, School of Public Health, The University of Sydney, Level 1, Medical Foundation Building (K25), 92-94 Parramatta Road, Camperdown, NSW, 2006
Advances in genetics and genomics provide new and powerful ways for individuals to understand their past and predict their futures. Increasingly, personal genetic information can be accessed in a number of ways. Direct-to-consumer genetic information sourced from the marketplace is one such method that is heavily and directly promoted to consumers. While this can be seen as an inevitable and valuable democratization and dissemination of biomedical knowledge, it is not unproblematic. Importantly, there is often a discrepancy between consumer expectations of what personal genome tests may provide and the explanatory power that they find they have.
In this presentation, we will draw on 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 a public survey, in-depth qualitative 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, we claim that seeking DTCPGT is best understood as a risk ritual, enabling ‘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 implications of this process illustrate the reality of that DTCPGT. That is, instead of decreasing uncertainty, it often reinforces unknowns for consumers of DTCPGT. This is in part because the scientific knowledge is still limited and because this kind of data always reveals different forms of uncertainty. We may also place too much faith in the relevance and power of genetic information while, at times, overlooking the importance of our social networks and life-stories.
Dr. Jacqueline Savard is a postdoctoral researcher at the Centre for Values, Ethics and the Law in Medicine (VELiM) at the University of Sydney. Her research focuses on the ethics of personal genomics in Australia. She is part of a nation-wide research project (GeniOz), funded by the Australian Research Council, to study Australian perspectives on genomics.