Elsevier

Futures

Volume 109, May 2019, Pages 142-152
Futures

From health to wealth: The future of personalized medicine in the making

https://doi.org/10.1016/j.futures.2018.06.004Get rights and content

Highlights

  • Expectations concerning the future of biomedicine need practical governing and maintenance.

  • Data-driven medicine and innovation policy, with commercial emphasis, are becoming the key framings of personalized medicine.

  • The focus of promoting personalized medicine has shifted from molecular biology and tissue samples to health-related data.

  • As personalized medicine is today a matter of innovation policy, it is primarily defined in terms of economy and commerce.

  • The Finnish imaginary of personalized medicine is shaped by simultaneous and overlapping practical measures.

Abstract

During the past decade, in Finland and elsewhere, biomedicine and genomics-related initiatives have been organized under the sociotechnical imaginary of personalized medicine. Within this imaginary, the medical future is promoted and made up, and the activities often subtly change the very meaning of what the imaginary of personalized medicine entails. In this paper, we study the Finnish strategies and pursuits addressing the utilization of genomics to advance personalized medicine. We build our analysis on previous research on sociotechnical imaginaries (Jasanoff & Kim, 2015) and the hype and expectations surrounding emerging technologies (Borup et al., 2006; Brown & Michael, 2003; Brown, 2003). We emphasize that the sociotechnical imaginary requires practical maintenance. In our analysis we address both rhetorical and action framings related to the making of personalized medicine and point out that activities of maintenance simultaneously pursue and reconfigure the imaginary of personalized medicine. Furthermore, our analysis shows that the focus of advocacy in personalized medicine has shifted from the promise of health to the promise of wealth as innovation policy and data-driven medicine have become the key framings.

Introduction

Biomedicine is future oriented and promissory; it comes with expectations of better treatments, more accurate diagnostics and prevention of diseases (see, e.g., Hamburg & Collins, 2010; Hood & Friend, 2011; Swan, 2012). Indeed, many STS studies on cutting-edge biomedicine and other emerging technologies have deployed expectations, hypes, hopes, and promises as analytical concepts (e.g., Borup, Brown, Konrad, & Lente, 2006; Brown, 2003; Brown & Michael, 2003; Fortun, 2008; Fujimura, 2003; Hedgecoe, 2004; Helén, 2013; Novas, 2006; Sunder Rajan, 2006). These studies emphasize that impressive advances in high-tech medicine are essentially based on their “power to raise hopes for new cures and better life in people” (Helén, 2004, p. 4). In this paper, we study the making of a medical future in the activities done to advocate for personalized medicine in Finland during the past decade.

In the wake of the Human Genome Project (HGP), great expectations were attached to human and medical genomics. A decade after the completion of HGP, fulfilment of the promises has been repeatedly postponed (Burke et al., 2010; Guttmacher & Collins, 2005; Lander, 2011). Still, the expectations should not be considered mere hype. As many studies have pointed out (Borup et al., 2006; Brown & Michael, 2003; Fujimura, 2003; Helén, 2013; Sunder Rajan, 2006; van Lente, 2012), expectations make things happen. They have the power to direct interests; they justify certain R&D projects or programs and make them attractive to funding institutions and investors. Expectations point out certain directions and paths for the future and, while doing so, reduce uncertainty. They also have the power to coordinate, as they bring actors, institutions, and resources together; organize practices and communities; and keep networks wired.

Jasanoff and Kim (2009, 2015) use the concept of sociotechnical imaginaries to capture the relationship between social expectations and the development of science and technology. The concept refers to “collectively held, institutionally stabilized, and publicly performed visions of desirable futures, animated by shared understanding of forms of social life and social order attainable through, and supportive of, advances in science and technology” (Jasanoff et al., 2015a, p. 4). Jasanoff et al. (2015b, p. 322) suggests that empirical analyses of sociotechnical imaginaries should be focused on “where transformative ideas come from, how they acquire mass and solidity, and how imagination, objects and social norms—including accepted modes of public reasoning and new technological regimes—become fused in practice”. We conceive of personalized medicine (see ESF, 2012; Tutton, 2014) as a sociotechnical imaginary of contemporary biomedicine that labels the expected changes. Personalized medicine is what is to come and what needs to be acted on for societies in Europe and elsewhere to care for their citizens appropriately (European Commission, 2013; OECD, 2013).

The imaginary of personalized medicine is a landscape in which medical genomics is assembled, policies are shaped, and scientific endeavours are carried out, both in Finland and elsewhere. We analyse how this sociotechnical imaginary is fused in practice by studying Finnish strategies that pursue the promises of genomics and personalized medicine. Our article contributes to the analyses of sociotechnical imaginaries (Jasanoff & Kim, 2015) and the discussion about hype and expectations surrounding cutting-edge technoscience (Borup et al., 2006; Brown & Michael, 2003; Brown, 2003). We focus on the practical dimensions and measures by which the imaginary is promoted and maintained. Jasanoff et al. (2015a, p.10) remarks that the “mechanics of the interconnections between technoscientific and political practice have not been articulated in detail or systematically”, especially not in relation to innovations. In this paper we show that national strategies perform and produce visions that are mutually constitutive with the sociotechnical imaginary (see Jasanoff et al., 2015a, p. 11, 14). Our empirical case is an excellent example of such co-constitution because the promotion of personalized medicine is an intensely state-driven and national endeavour in Finland. We also contribute to the discussion on expectations by analysing how a sociotechnical imaginary moulds over time.

The train of thinking for our study is as follows: Surely, expectations shape practices within the sociotechnical imaginary of personalized medicine. They have the power to modify how present resources are reconfigured and reorganized to point toward a particular future and even to mobilize that future today (Brown, 2003, p. 5). However, the power of expectations is not merely performative (cf. Borup et al., 2006; van Lente, 2012). To be effective, expectations need to be articulated through and embedded in practical measures for pursuing personalized medicine in concrete ways and in actual political, economic, medical science, and health care settings. We analyse the performative and practical aspects of our case with the help of policy framing analysis (e.g. Fischer, 2003; Hajer et al., 2003; Schön & Rein, 1994; for an overview, see van Hulst & Yanow, 2016) By framing, we refer to an interpretative scheme for problem-setting and sense-making in policymaking and governance. We talk of framing instead of frames as we want to emphasize the processual and constructive character of articulation of meanings, problems, values and agendas in policy-making (van Hulst & Yanow, 2016). Following Schön and Rein (1994), we make a distinction between two levels of framing upon expectations. The first level–rhetorical framing–comprises of general schemes of persuasive argumentation that describe and organise how the expectations, promises and advocacy of personalized medicine are attached to certain objects, objectives, activities, and actors in a consistent and justifiable way. The second level of framing –action framing- informs more directly policy programs and implementation. Within action framing, specific expectations and practical steps and demands for achieving personalized medicine are defined and outlined. Altogether, the concept of framing enables us to grasp the practical or even material side of the sociotechnical imaginary of personalized medicine. With the help of the concept we can analyse how reasoning, strategies, and practices of implementation are connected. In addition, framings allows us to see the dual nature of the practice of putting expectations into action: they work both to make the future and to keep up expectations.

Expectations attached to biomedicine have to be constantly maintained and iterated by means of science, politics, administration, and commerce. Such pursuits to govern and maintain multiple expectations are oriented toward a future that is not conceived of in terms of progress but rather as opportunities involving unpredictability and uncertainty. They designate practices to keep the future open by creating prospects and by pointing out and mobilizing opportunities and resources that biomedical R&D, clinical care, business, health care management, policymaking, and even personal self-help may utilize (Helén, 2013).

When scientific, administrative, political, and business-making etc. practices search for, open up, and create opportunities and harness the potential for, for example, personalized medicine they bring together many kinds of stakeholders and actors to pursue biomedical innovations in global and local settings. In a wide range of studies on public policy and administration, organizations, and corporate management, governance has become a nearly catchall concept to refer to such activities. By governance, many scholars emphasize the processual character and open-endedness of policymaking, management, or organization reforms. It means practices of governing by which the interests, goals, activities, and powers of multiple stakeholders are managed, balanced, and combined in the process of making and executing a policy or a reform (e.g., Bevir, 2012). Constant evaluation of the process and its achievements and outcomes as well as readjustment of the objectives are also seen to characterize governance (e.g., Jessop, 1998, 2002). Practices to maintain the promise of personalized medicine share many of these features and, from the perspective of governance studies, they can be seen as governance of innovation.

Recent literature on innovation governance (e.g., Deschamps & Nelson, 2017) emphasizes systems, models, leadership, and top–down management of innovative activities. Our study points to a somewhat different direction. Practices and rationales promoting personalized medicine entwine and enmesh multiple activities with each other, such as business, from financing to marketing, resource and personnel management, scientific research, product development, consulting, and public governance and policymaking, while seeking to manage many sorts of expectations. This kind of innovation and technology governance has a particular feature—namely, it involves experimenting with existing epistemic, professional, institutional, political, legal, administrative, and business orders (Helén, 2013). By pointing this out, we want to emphasize that practices dealing with the future include unpredictable and unintentional elements.

In the domains of medicine and health care, the mentioned practices of governance manifest themselves by, for example, endless rearrangements of environments and assemblages of biomedical science, medical business, and clinical care in local, national, and transnational settings. In this paper, we take a closer look at this particular configuration by analysing how governance of and by expectations work and configure in pursuits to sustain and promote medical genomics under the imaginary of personalized medicine in Finland. In particular, we are interested in how such governance reconfigures the sociotechnical imaginary. We study actual strategies, “roadmaps”, proposals for and projects involving experimentation, iteration and implementation of techniques, and practices of the future medicine in Finland, with a focus on reasoning over the objectives, milestones, measures to be taken, issues to be improved, and resources to be mobilized for becoming of personalized medicine. In particular, we study the framings within which expectations about the future of personalized health care are aligned with the ongoing creation of large depositories of digital health data.

The performative effectivity of a sociotechnical imaginary requires practical maintenance. We conceive of the efforts to advance personalized medicine as such maintenance. Through our analysis, we want to back up two claims about expectations as related with governance and policy-making on biomedical technology. First, in practices of promoting and seeking opportunities to advance personalized medicine, sustaining prospects is a crucial task that is seemingly more important than the actualization of promises as actual outcomes, including scientific results or new health care products. Second, our case shows that such maintenance requires the reshaping of expectations, the readjustment of prospects, and setting them in new contexts with new alliances. Thus, the actual work—both performative and practical—upon the expectations for personalized medicine constantly redefines the sociotechnical imaginary itself.

Our paper unfolds as follows: In the next section, we introduce the data on which our analysis is based on and our research methods; after that, we outline the Finnish strategies to promote medical genomics and personalized medicine during the past decade. In Section 4, we analyse the currently predominant frames of reasoning for promoting personalized medicine, and Section 5 focuses on the practical implementation required to make personalized medicine and its benefits happen. In the concluding section of the paper, we discuss the characteristics of governance of biomedicine in light of our case, Finland. We emphasize that the practices and the rationale of governance support and maintain the sociotechnical imaginary of personalized medicine by modifying and gradually changing it.

Section snippets

Materials and methods

The research material analysed for this article consists of (a) the main Finnish strategy papers and reports that outline and evaluate policies related to biomedicine and health technology from 2005 to 2016 (n = 13) (see Fig. 1); (b) press releases and news posts related to the strategies, biobanks, and the genome centre in Finland (n = 9) from 2014 to 2017; and (c) presentation slides by different stakeholders and field notes from seminars and events concerning health technology, biobanks, and

National strategies: creating value for science, health care, and commerce

Before going into the framings, we first describe the major strategies and milestones from the past decade (see Fig. 1). The first strategy papers in our material formulated genomics as a rising field with huge scientific and medical potential. Biobanks were regarded as offering a practical possibility to enhance genomic research and medicine, and preparation for a biobank act started in 2006. Concomitantly, up until 2013, expectations of personalized medicine were placed on biobanks and

Framing the promise

A sociotechnical imaginary like personalized medicine requires framings to become effective and “fused in practice” (Jasanoff et al., 2015b, p. 322). The strategy papers we analysed provide two predominant framings for the prospects of genomics as personalized medicine in Finland. They reflect changes in the reasoning by which medical genomics is promoted. The first framing is innovation policy, which emphasizes economic and commercial aspects of medical genomics, and the second one is

Framing the practical measures

The strategies and roadmaps include many practical measures to harness this national treasure. Despite the expectations, the Finnish health data reservoir has not been fully appropriated. On the one hand, the potential for combination of data from different digital databases and depositories is seen as enormous. On the other hand, only a fraction of this potential is currently utilizable. Consequently, the standardization, coverage, and effectiveness of Finnish health care institutions in

Discussion

We have analysed how medical genomics, biobanks, and biomedicine have been promoted in Finland within a sociotechnical imaginary (Jasanoff et al., 2015a) of personalized medicine. We identified two rhetorical framings within which expectations, pursuits, plans, and activities for advancing personalized medicine are connected into a reasonable and justifiable endeavour: innovation policy and data-driven medicine. During the past decade, these framings have intensified and become predominant.

Funding

This work was supported by the Academy of Finland [grant numbers 292408; 292456] and Tekes – The Finnish Funding Agency for Innovation [grant number: 3986/31/2013].

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