Health Law and Regulation Staff Seminar: Joseph Savirimuthu

Wearable Technologies, Social Media and Health Information: What We Need To Understand about Consent Under Data Protection Law

Presentation at Health Law and Regulation Unit Staff Seminar on 16th March 2016

Abstract

Individuals are now self-generating volumes of health and sensitive information through social media, wearable technologies and mobile applications. This presentation assesses whether technological affordances are in harmony with individual’s fundamental rights under existing data protection law. Scholarly and policy accounts of the role of consent are incomplete and depictions of the interplay between affordances and humans do not reflect how understandings and practices are being reconfigured by technologies which in turn implicate the realisation of fundamental rights. Alan Gewirth’s seminal work is used to introduce a new dimension to considering how we can better grapple with the implications of real-time operation of these affordances for consent. To be sure, effective agency, which forms the bedrock of freedom and democratic rights, anticipates a more expansive view of consent and Gewirth’s Principle of Generic Consistency may provide insights, which help integrate duties, scope of obligations and individuals’ expectations under data protection law. As interactions between technology and individuals become increasingly blurred, consent has a significant role to play in the operationalization of human rights and values. If fundamental rights discourse is to avoid being instructed by the tyranny of convenience, asking the following question may not be a bad place to start: What is there to Understand about Consent?

I. Introduction

What is there to understand about consent? Never has such a question needed a principled response under data protection law on the issues raised by health and fitness tracking technologies. Individuals are now self-generating volumes of health and sensitive information through social media, wearable technologies and mobile applications. As consumers of these technologies, health and well-being opportunities can now be promoted through self-discovery, knowledge and empowerment.[1] Wearable technologies provide affordances, which equip individuals with convenient and user friendly interfaces. These affordances also enable individuals to take responsibility for their health and lifestyle choices.[2] For businesses and health care services providers technological affordances and tracking technologies now transform the human body into an invaluable resource for developing innovative products and services. Wearable technology innovations and growing consumer demand undoubtedly engages complex legal, ethical, cultural and economic issues.[3] As bodies of self-generated health and sensitive information are collected, aggregated and shared, it becomes imperative that the design of these technologies are responsive to customer sensitivities to issues such as consent, and the expectation that processing of personal information is fair and legitimate.[4] If health and well-being opportunities offered by these technologies are to be realised, we need to ensure that the design and use of these technologies cohere with nuanced understandings of fundamental data protection principles. The General Data Protection Regulation may at first glance offer some hope by providing two, what would seem to be fresh answers. First, data protection is explicitly stated to be a fundamental right. Second, consent is given specific attention and its recitals aim to clarify the mechanisms for automated processing and profiling activities. These are undoubtedly necessary policy responses but they will be found to be inadequate when confronted with an empirical reality of social practices and attitudes: affordances of wearables promise personalisation and convenience against the background of individuals embracing the normalisation of the role of sensors and algorithms as conduits for agency. Treating explicit consent as separate from obligations of fair and legitimate processing leaves data controllers with obligations to police their behaviour and in effect impose on them, the responsibility to ensure that any conflict of interests do not prejudice the rights and expectations of data subjects.[5] And when these efforts fail - contractual assent is seen as absolving the ethical dilemmas. Wearable technologies raise another set of interrelated issues that seem to be buried deep within contemporary accounts of consent. The trajectory of consent as mapped out within prescriptive and proscriptive standards and duties, seems ill-equipped to vest the concept with insights and understanding that are capacious enough to reflect and explain the role of affordances of these technologies in mediating and anticipating our choices, values and preferences. Empowering consumers with affordances brings to the foreground concerns about the false dichotomy in the relationship between technology and fundamental rights.[6] It is not entirely clear whether technological affordances leave room for individual’s preferences and choice in a way that is commensurate with effective agency and the rule of law. Scholarly and policy accounts of the role of consent are incomplete and depictions of the interplay between affordances and humans do not reflect how understandings and practices are being reconfigured by technologies which in turn implicate the realisation of fundamental rights. These preoccupations motivate the argument offered in this Article. Alan Gewirth’s seminal work is used to introduce a new dimension to considering how we can better grapple with the implications of real-time operation of these affordances for consent. To be sure, effective agency, which forms the bedrock of freedom and democratic rights, anticipates a more expansive view of consent and Gewirth’s Principle of Generic Consistency may provide insights, which help integrate duties, scope of obligations and individuals’ expectations under data protection law. As interactions between technology and individuals become increasingly blurred, consent has a significant role to play in the operationalization of human rights and values. The article reviews the current law and concludes that an understanding of consent may shed some light on why wearable technologies may be instructing the practice of fundamental rights.