Is personalized medicine different? (Reinscription: the sequel) A response to Troy Duster

The obliteration of life: depersonalization and disembodiment in the terabyte era

“…7 We are emptying ourselves, dissolving into clouds of bits and bytes, and filled up again with data, as the new discourse of the Other, with its (rigidly anonymized) normativity, framed in terms of normalcy levels, that is, biomedical standard expectations, adapted to an individual's age, sex, ethnicity, etc. (Prainsack 2015). Previous instances of "personalizm" and "personization" (Chadwick 2011), previous ideas and concepts pertaining to personhood and identity, are obfuscated or even erased to make room for these new sets of data-based, quantified indicators and operationalizations of me-ness.…”

“…Concluding remarks: from Big Data to kenotic life Processes of biomedical symbolization and literation seem to be heading for an Omega point, as omics data claim to make human life fully transparent with the help of data-rich characterizations of individuals, at various stages of health and disease (Prainsack 2015), providing a comprehensive, high-density portrayal of a person's health status, combining static (e.g. gene sequence) with dynamic (lifestyle, responses to environmental challenges, etc.)…”

“…On the one hand, human individuals are encouraged to use high-throughput sequencing data to become the "managers" of their personal health condition (Harvey 2009), relying on high-resolution health transparency, provided by next-generation sequencing and epigenomics information. By combining "static" data (on individualized genome sequences) with "dynamic" data (on the impact of lifestyle, diet and other characteristics, framed as changeable by individuals), personalized medicine summons us to invest in self-optimization (Prainsack 2015). At the same time, in the era of high-pace sequencing technologies, human individuality and subjectivity seem to dissolve in depersonalizing data streams.…”

Nanomedicine and personalised medicine: understanding the personalisation of health care in the molecular era

“…Indeed, most social science work on personalised medicine has associated the latter with pharmacogenomics or pharmacogenetics. It has explored the ‘post‐genomic surprise’ of the persistence or reimagining of racial and ethnic categories (Duster , Hunt and Kreiner , Prainsack ), the spectre of genetic discrimination in private insurance (Joly et al . ), its resonance with neoliberal imaginaries (Dickenson ), the negotiation of new somatic risks (Groves ), ontological conceptions of disease (Boenink , Timmermans and Buchbinder ) and the ‘political’ passage of pharmacogenitics through the clinic (Hedgecoe ).…”

“…Indeed, most social science work on personalised medicine has associated the latter with pharmacogenomics or pharmacogenetics. It has explored the 'post-genomic surprise' of the persistence or reimagining of racial and ethnic categories (Duster 2015, Hunt and Kreiner 2013, Prainsack 2015, the spectre of genetic discrimination in private insurance (Joly et al 2010), its resonance with neoliberal imaginaries (Dickenson 2013), the negotiation of new somatic risks (Groves 2013), ontological conceptions of disease (Boenink 2010, Timmermans andBuchbinder 2010) and the 'political' passage of pharmacogenitics through the clinic (Hedgecoe 2004). Finally, and extremely usefully, scholars have also inserted personalised medicine in the broader processes of 'biomedicalization' (Clarke et al 2010) and have detailed the continuities and discontinuities between contemporary personalisation inflected by genomics and earlier forms of personalisation that date back to the 19 th century (Tutton 2014).…”