Does Solidarity have a Role in Keeping Big Data Saf

Does Solidarity have a Role in Keeping Big Data Safe? Presented by: Prof. Prainsack Date: 4 November 2020 Structure - The challenge - Solutions so far - Solidarity-based data governance - Example: Nudging Datafication - Ever wider aspects of our bodies and lives are recorded - All data are health data - Processes of datafication, digitization, and automation also change social and political practices New Practices Of Datafication - [Prainsack B. 2017. Personalized Medicine: Empowered patients in the 21st century? New York University Press.] • "I look at my Fuel points and when I see I have not reached my goal, I may take a walk to get my Fuel points for the day. You get this little satisfactory feeling just because you have reached your goal." Datafication, Digitization, Automation - Data are not merely representing reality but creating it Challenges - End of structural privacy (H. Surden) - End of stratification as we know it: Automation and "silent rationing", missing populations - Red tape and other obstacles for big data analysis by public bodies (and where this research is in the public interest) - Increasing power asymmetries between data subjects and data users Approaches So Far - Strengthen individual control, e.g. EU General Data Protection Regulation, dynamic consent, etc. Problems With Focusing Individual Control - Practical and substantive - Alert fatigue - Feasibility and cost - Not everybody is able to exercise control - How realistic is opting out? (monopolies etc.) - Shifting responsibilities to individuals - Can distract from larger questions (should these data be collected in the first place? Who does this benefit?) - Can conceal power asymmetries - Remains within the bounds of categories and nomenclatures of the paper age - Impediment to collective action - Ignores the multiplicity and relationality of data What We Need: - Individual control, e.g. EU General Data Protection Regulation, dynamic consent, etc. - And collective control, e.g. "data as labor" approach, data trusts, solidarity/based data governance, commons approaches Solidarity-Based Health Governance What Is Solidarity? - [Prainsack & Buyx 2011; 2017] • Solidarity signifies practices reflecting a commitment to carry "costs" (financial, social, emotional, or otherwise) to assist others with whom we recognize similarity in a relevant respect - Solidarity signifies practices reflecting a commitment to carry "costs" (financial, social, emotional, or otherwise) to assist others with whom we recognize similarity in a relevant respect • Practice: 1. not merely an inner sentiment; 2. similarity in a relevant respect ("community of fate"; "fellowship among equals") • Self- and other-directedness • Persons are inseparable from their social relations • Fellowship: symmetrical relationship in the context of a particular practice (typically not symmetry in all respects) • The relationship between reciprocity and solidarity is not linear Three Pillars Of Solidarity-Based Data Government - Facilitating data use that has public value - Harm mitigation - Taxing corporate data use that has little or no public value What We Need: Better Harm Mitigation - Harm mitigation Bodies (H (outside of the legal domain) - Three main functions: • Collect information on the types of harm occurring • Relay feedback to improve data use • Financial support How Does “Nudging" Fit In? - "Any aspect of the choice architecture that alters people's behavior in a predictable way without forbidding any options or significantly changing their economic incentives. To count as a mere nudge, the intervention must be easy and cheap to avoid" Why Does Nudging Seem Attractive? - Addresses "demand side" rather than "supply sic - Does not impose value preferences on people - Value-neutral vehicle to help people what they really want to do (or should want to do in their own interest) - Cheap and effective First Law of Nudging - Nudging is embedded in a system of moral and political norms a values, even when it pretends that it isn't. • Nudging is a "quick fix" for the rational actor axiom • The very choice of nudging as an instrument is a value judgment What We Do By Nudging 1. Relieve public policy and other collective actors from responsibility for outcomes 2. Set "the human subject as a target of correctional re- rationalization" (Whitehead et al. 2012: 305). 3. Move attention (and resources) away from structural factors (e.g. social determinants) to individual "behaviors" Concluding Remarks - Not only solutions, but also problem framings, related to big data practices need to be adequate to the digital age - Solidarity-based data governance: • Offers a relational, rather than individualistic, understanding of data subjects and data • Overcomes the dichotomy between individual v. collective interests and benefits • Gives guidance for the creation of institutions and instruments that draw upon, and foster, mutual support and the sharing of risks and benefits