What Role for Law, Human Rights, and Bioethics in an Age of Big Data, Consortia Science, and ConsortiaEthics? The Importance of Trustworthiness
Laws. 2015 Sep 1;4(3):515-540.
- 1J. Kenyon Mason Institute for Medicine, Life Sciences and the Law, School of Law, University of Edinburgh, Old College, South Bridge, Edinburgh EH8 9YL, UK.
- 2Faculty of Communications and Department of Industrial Engineering, Office of the President, International Technology and Innovation Policy, Gaziantep University, Gaziantep 27310, Turkey; vural.ozdemir@alumni.utoronto.ca or vural.ozdemir@gantep.edu.tr ; Amrita School of Biotechnology, Amrita Vishwa Vidyapeetham (Amrita University), Amritapuri, Clappana P.O., Kollam, Kerala 690 525, India.
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.
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