Global Governance for Personalized Medicine,Politics of Uncertainty,and Pierre Bourdieu

Perspective

In May 2023, Romania introduced a new law giving citizens and patients the right to personalized medicine, based on medical recommendation. The law is poised to shape clinical practices in Romania and, potentially, current thinking on global governance for genomics, proteomics, metabolomics, phenomics, artificial intelligence, and other technologies of relevance to personalized medicine. Marius Geanta and colleagues discuss Romania's new law in the May issue of OMICS.

Personalized medicine is related to the larger umbrella field of theranostics, the fusion of therapeutics and diagnostics. Theranostics extends beyond personalized drug therapy and genomics in terms of its range of health care applications and integrative deployment of multiomics technologies. Theranostics aims to individually tailor and thereby enhance the safety and efficacy of a multitude of planetary health interventions such as drugs, vaccines, and nutrition, and using platforms ranging from genomics to phenomics to artificial intelligence and the Internet of Pharmaceutical Things (Özdemir, 2020). After Romania's new law, it is therefore timely to reflect on whether there should also be “a right for theranostics in planetary health,” considering the potential for future pandemics and ecological crises in the 21st century.

The new law also raises questions on the politics of uncertainty associated with personalized medicine futures. Historically, there has been an attraction toward new legislation and law as instruments for emerging technology governance and conflict resolution among innovation stakeholders to enable “future-proof” innovations. This affinity is common among technology experts and investors, scientists, policymakers, funders, and philanthropists, and in global financial markets and businesses. However, is uncertainty in the future trajectories of a field such as personalized medicine due to technical imperfections and accidents and the lack of laws that enforce a predictable linear development trajectory? Alternatively, do unchecked assumptions and power asymmetries in innovation ecosystems contribute to the unpredictable and often volatile technology futures?

Laws, legal modes of reasoning, and consensus reports are among the prominent and popular governance instruments (Sarewitz, 2011). They become political determinants of planetary health by dictating how, by whom, and to what ends scientific knowledge is produced, legitimized, and valorized in health care, and which emerging technologies and innovations are funded. If science and technology governance is conceived undemocratically and lacks systems thinking and grounding in political theory, it can result in social injustices and omission and silencing of valuable innovations (Özdemir, 2024a; Özdemir, 2024b; Reinhart, 2023).

Furthermore, while laws and legal modes of reasoning are certainly useful for conflict resolution and closure, their overprivileging in emerging technology and uncertainty governance can potentially bring about a depoliticizing effect as suggested by the works of the sociologist Pierre Bourdieu. Bourdieu noted that “[t]he judicial situation operates like a neutral space that neutralizes the stakes in any conflict through the de-realization and distancing implicit in the conversion of a direct struggle between parties into a dialogue between mediators” (Bourdieu, 1987, p. 830).

Put in other words, Bourdieu's work suggests that transformation of the struggles and dissent that are the bedrocks of democratic governance into a “dialogue between mediators” can pave the way for depoliticization of technology governance, and by extension, democratic deficits in technology policies. In the current historical moment when personalized medicine has uptake around the world, the critical sociological gaze offered by Bourdieu on law and legal modes of reasoning, and the field of critical legal studies are particularly relevant and timely for the democratization of global governance of multiomics technologies.

Beyond personalized medicine and theranostics, climate emergency also calls for a critical sociological gaze in policymaking. With continuing apathy in global governance, lack of radical structural changes (Özdemir, 2024b), and underestimation of the threat of nonlinear dynamics that can set off with further global warming, there will likely be ruptures and discontinuities between the present and the futures (Albert, 2022). This calls for keeping an open, critical and vigilant mind, and keeping futures open and reflexive rather than settled through linear reductionist policies that connect the status quo and a singular preordained future.

The value of dissent for democratization of science has also been noted in a context of the prevailing practice of consensus reports in policymaking:

“The very idea that science best expresses its authority through consensus statements is at odds with a vibrant scientific enterprise. Consensus is for textbooks; real science depends for its progress on continual challenges to the current state of always-imperfect knowledge. Science would provide better value to politics if it articulated the broadest set of plausible interpretations, options and perspectives, imagined by the best experts, rather than forcing convergence to an allegedly unified voice.” (Sarewitz, 2011).

Democratization of personalized medicine innovations requires sustained political engagement, including reflexivity on the value-laden choices made in the course of responses to present and future uncertainties. Expanding technology governance by law and legislation in ways that are grounded in political theory, critical legal studies and sociology of law would help to strengthen not only democratic global governance of multiomics technologies and personalized medicine innovations but also democracy in quotidian science and society.