What Role for Law, Human Rights, and Bioethics in an Age of Big Data, Consortia Science, and Consortia Ethics? The Importance of Trustworthiness.

Edward Dove,Vural Özdemir

doi:10.3390/laws4030515

Abstract

The global bioeconomy is generating new paradigm-shifting practices of knowledge co-production, such as collective innovation; large-scale, data-driven global consortia science (Big Science); and consortia ethics (Big Ethics). These bioeconomic and sociotechnical practices can be forces for progressive social change, but they can also raise predicaments at the interface of law, human rights, and bioethics. In this article, we examine one such double-edged practice: the growing, multivariate exploitation of Big Data in the health sector, particularly by the private sector. Commercial exploitation of health data for knowledge-based products is a key aspect of the bioeconomy and is also a topic of concern among publics around the world. It is exacerbated in the current age of globally interconnected consortia science and consortia ethics, which is characterized by accumulating epistemic proximity, diminished academic independence, “extreme centrism”, and conflicted/competing interests among innovation actors. Extreme centrism is of particular importance as a new ideology emerging from consortia science and consortia ethics; this relates to invariably taking a middle-of-the-road populist stance, even in the event of human rights breaches, so as to sustain the populist support needed for consortia building and collective innovation. What role do law, human rights, and bioethics—separate and together—have to play in addressing these predicaments and opportunities in early 21st century science and society? One answer we propose is an intertwined ethico-legal normative construct, namely trustworthiness. By considering trustworthiness as a central pillar at the intersection of law, human rights, and bioethics, we enable others to trust us, which in turns allows different actors (both nonprofit and for-profit) to operate more justly in consortia science and ethics, as well as to access and responsibly use health data for public benefit.

Highlights

Global health governance and reform, as well as debate on the linkages between science, bioethics, and human rights, have been in high gear the past several years [1,2,3,4]
Instead of looking to law as a panacea for the concerns we have identified with consortia science, consortia ethics, and commercial use of health data, we should look to norms that that guide virtuous behavior
We have suggested that today’s Big Science projects, be they the whole-genome sequencing of a population, population-based biobanks, high-energy experimental physics or space exploration, are characterized by the intertwining and embedding of ethicists and scientists in large-scale global consortia

Summary

Introduction

Global health governance and reform, as well as debate on the linkages between science, bioethics, and human rights, have been in high gear the past several years [1,2,3,4]. [...] Ensuring a successful future for the biological sciences will require restraint in the growth of large centers and -omics-like projects, so as to provide more financial support for the critical work of innovative small laboratories striving to understand the wonderful complexity of living systems” [28] These new practices within Big Science, in turn, may be generating a paradigm shift in modes of reasoning about science and what science and data mean—in other words, ontological and epistemological changes. We explore conceptually two manifestations of global interconnectedness in the health research context—the rise of consortia science and ethics, and the increasing commercial use (commercialization) of health data in the pursuit of a bioeconomy We question what their impact might be on bioethics, law, and human rights, and how these fields in turn can address some of the tractable problems raised. We aim to ensure that little science, little data, and “indie” ethics can flourish, and that both they and their “big” and consortia-driven counterparts are grounded in virtue and justice

The Emergence of Consortia Science and Consortia Ethics

Whither the Integrity and Independence of Scholars?

Health Data for All Seasons and Motives

Conclusions

10. Genomics