All the Postgenomic World is a Stage: The Actors and Narrators Required for Translating Pharmacogenomics into Public Health

Abstract

KeywordsGenomics and development; genomics without borders; global governance of biotechnology innovation and uncertainty; LGBT community; LMICs; public health pharmacogenomics; reflexive technology governance; responsible innovation; science and technology studies; taxonomy of knowledge-based innovation "A taxonomy of actors and dual-order narrators takes the concept of innovation systems to a new level of stringency and standards." TAKING INNOVATION FROM THE CLINIC TO THE STREETSThe now decade-old post-genomic era is marked with stories of triumph and tribulation, hope and hype, and gradual, sometimes serendipitous, innovations in personalized medicine [1]. While governments have prioritized research and development (R&D) and moving discoveries from laboratory to innovation [2], innovations (especially those in the biotechnology sector) have often underwhelmed governments, investors and the public in terms of utility [3]. As the post-genomics era moves into its second decade, including directto-consumer genomics [4], we suggest that the personalized medicine innovation system is highly fluid and in flux as a result of disappointment and fiscal restraint, and old orders of understanding innovation's nature and function are undergoing transformation. Much of the western world is now locked in a straightjacket of budgetary constriction; past calls for more R&D funding simply will not do as the fight for increasingly small resources intensifies and citizens resist the idea of greater taxation. New ways of conceptualizing innovation must

Within and beyond the communal turn to informed consent in industry-sponsored pharmacogenetics research: merits and challenges of community advisory boards

“…Dove and Özdemir (2013) challenge the view that by inviting the public to the research agenda, automatically more just and ethically sound pharmacogenetics research will emerge. They implicitly call for more socially organized public engagement to pharmacogenetics research.…”

“…Some scholars have already noted the perils of considering community involvement with the research only with a tokenistic (Dove and Özdemir 2013) or window dressing approach (Quinn 2004). Dove and Özdemir (2013) challenge the view that by inviting the public to the research agenda, automatically more just and ethically sound pharmacogenetics research will emerge.…”

“…Some scholars claim that in a broad sense more and more Bunknown^components find the way to the research table, calling it Bmode 2^knowledge production that denotes a coproduction of the knowledge by both experts and non-experts (Dove et al 2012). Specifically, Dove and Özdemir (2013) show the relevance of such reconsideration of the role of society in knowledge production in the intersection between public health and pharmacogenomics. Moreover, some scholars also note the importance of considering pharmacogenetics as a scientific enterprise that is Bdeeply embedded in the values and history of the society where it is produced^ (Santos et al 2015).…”

“…Considering the role of CABs within the broad context of social deliberation on pharmacogenetics research, membership of CABs could be extended, at least in some cases, to outsiders who are concerned about social justice as a principle (Dove and Özdemir 2013). In doing so, the communities can welcome not only possible consumers but also citizens.…”

Crowd-Funded Micro-Grants for Genomics and “Big Data”: An Actionable Idea Connecting Small (Artisan) Science, Infrastructure Science, and Citizen Philanthropy

“…This innovation research article maps and underscores the value and timeliness of these new funding strategies to cultivate global science, particularly in LMICs, where genomics innovations need translation not only from ''lab to the clinic'' but also from ''clinic to the streets'' in order to address real-life concerns and priority needs of LMIC citizens (Dove and Ö zdemir, 2013a;Ö zdemir, 2009). …”